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INFORM. MONITOR. MEASURE. SUCCEED.

© Burson-Marsteller/PatientView

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Publisher:Burson-Marsteller37 Square de MeeûsB-1000 BrusselsBelgiumTel: +32-(0)2-743-66-11email: [email protected]://www.bmbrussels.eu

Media Partner:European Health Forum GasteinTauernplatz 15630 Bad HofgasteinAustriaTel: +43-6432-3393-270email: [email protected]://www.ehfg.org

Copyright © Burson-Marsteller / PatientView 2011-2012

Any part of this document may be used for non-commercial purposes, as long as the source is acknowledged. For any queries regarding reproduction of this publication, please contact either Burson-Marsteller or PatientView.

Use in a library

Should you be using this Directory in a library, please note that it remains protected by copyright.

All restrictions imposed on the use of this Directory continue to apply.

Limited liability

The author and publisher of this Directory (and their agents) offer no warranty as to the accuracy or suitability of this publication for any purpose. Although due care has been given to ensuring the validity of the data published in this Directory, the author and publisher can accept no responsibility or liability for any losses or damages of any kind, however so arising from actions taken, or based upon, the contents of this publication.

The author and publisher reserve the right to change the design, contents, and layout of the Directory, should they consider this action appropriate.


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Foreword from Paola Testori Coggi v

Index vi

A-Z list of specialisations vi

A-Z list of entries xi

A-Z list of acronyms xv

Preface from the publisher xix

Preface from the author xx

Key to data xxii

Entries (in alphabetical order) 1-176

Contents


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This fourth edition of the European Patient Group Directory focuses on the transparency of the governance and funding of groups active in health policy. This is in line with the approach taken by the European Transparency Initiative (ETI) – a joint European Commission and Parliament measure. Openness can only increase the legitimacy of stakeholders, the process of consulta-tion, and EU policy itself.

In the European Commission’s Health & Consumers Directorate, we have a long tradition of involving patient groups in our discussion fora and consider them a fundamental stakeholder of our portfolio. In the area of health it is essential that we work together at European level with the widest possible range of partners to develop and implement health policy and actions. This doesn’t just mean national governments and international organizations, but also NGOs, profes-sional bodies and patients groups, as often it is those closest to the challenges that can give us the greatest insights into how to go about tackling them.

Since 2004, the EU Open Health Forum has convened every 2 years to inform and involve key health stakeholders in European health policy. The EU Health Policy Forum, which brings to-gether 52 umbrella organizations, meets more frequently to review the EU’s work in various ar-eas of public health and to adopt recommendations. In addition, through on-line consultations on our policy initiatives, we ensure that the widest range of stakeholders and citizens have their voices heard. These and other mechanisms ensure that patient groups are completely engaged in shaping patient-centred healthcare policy in the EU.

I am certain that this latest edition of the Directory will be used by many actors in health and will provide useful guidance and open access to patient groups in the European Union and beyond.

Paola Testori CoggiDirector General for Health and ConsumersEuropean Commission

Foreword


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ADDICTIONEurocare (European Alcohol Policy Alliance), Page 30.

Europe Against Drugs (EURAD), Page 38.

European Mutual-Help Network for Alcohol-Related Problems (EMNA), Page 101.

ALTERNATIVE AND COMPLEMENTARY MEDICINES European Federation of Homeopathic Patients’ Associations (EFHPA), Page 73.

European Federation of Patients’ Associations for Anthroposophic Medicine (EFPAM), Page 78.

AUTO-IMMUNE AND IMMUNE DISEASESCoeliac Youth of Europe (CYE), Page 21.

European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders (EPOS), Page 46.

Federation of European Scleroderma Associations (FESCA), Page 127.

Lupus Europe, Page 154.

BLOOD DISORDERSAntiCoagulation Europe (ACE), Page 9.

European Federation of Associations of Patients with Haemochromatosis (EFAPH), Page 70.

European Haemophilia Consortium (EHC), Page 85.

Thalassaemia International Federation (TIF), Page 175.

BONEInternational Osteoporosis Foundation (IOF), Page 148.

BRAIN INJURYBrain Injured and Families - European Confederation (BIF-EC), Page 17.

CANCERAssociation of European Cancer Leagues (ECL), Page 12.

Cancer Support Group asbl (CSG), Page 18.

CML Advocates Network, Page 20.

Das Lebenshaus e.V., Page 25.

EUROPA DONNA—the European Breast Cancer Coalition (ED), Page 35.

Europa Uomo—the European Prostate Coalition (EUomo), Page 36.

europacolon (EC), Page 37.

European CanCer Organisation (ECCO), Page 51.

European Cancer Patient Coalition (ECPC), Page 52.

European Cervical Cancer Association (ECCA), Page 53.

European Myeloma Platform (EMP), Page 102.

Global GIST Network (GGN), Page 131.

Global Lung Cancer Coalition (GLCC), Page 132.

IndexesA-Z lists of specialisations, entries and acronyms

Specialisations

Assigning specialisations to the organisations in this Directory is subjective. Groups that straddle several activities have been listed under more than one specialty. Some groups may not agree with their categorisation. This contents list of specialties can only be an approximate guide.


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International Brain Tumour Alliance (IBTA), Page 143.

LeukaNET e.V. [Formerly Leukämie-Online e.V.], Page 153.

Lymphoma Coalition (LC), Page 155.

Myeloma Euronet (ME), Page 158.

Rare Cancers Europe (RCE) [Formerly European Action Against Rare Cancers; EAARC], Page 166.

Sarcoma Patients EuroNet Association (SPAEN), Page 170.

CARERSEurocarers (European Association Working for Carers), Page 31.

European Federation of Unpaid Parents and Carers at Home (FEFAF), Page 81.

CHILDRENEurochild , Page 32.

European Association for Children in Hospital (EACH), Page 43.

European Federation of Parents of Hearing-Impaired Children (FEPEDA), Page 77.

European Foundation for the Care of Newborn Infants (EFCNI), Page 82.

CIVIC AND CONSUMER WITH INTEREST IN HEALTHCAREActive Citizenship Network (ACN), Page 1.

BEUC—the European Consumers’ Organisation , Page 16.

European Community of Consumer Co-operatives (Euro Coop), Page 57.

European Federation of National Organisations working with the Homeless (FEANTSA), Page 74.

Health Action International-Europe (HAI-Europe), Page 133.

Platform of European Social NGOs (Social Platform), Page 164.

CONGENITALInternational Federation for Spina Bifi da and Hydrocephalus (IF), Page 147.

DIABETESInternational Diabetes Federation-European Region (IDF-Europe), Page 146.

DISABILITYAMD Alliance International (AMDAI), Page 8.

Association for Research and Training on Integration in Europe (ARFIE), Page 11.

Disabled Peoples’ International-Europe (DPI-Europe), Page 27.

European Association of Cochlear Implant Users (EURO-CIU), Page 45.

European Association of Service Providers for Persons with Disabilities (EASPD), Page 47.

European Blind Union (EBU), Page 48.

European Coalition for Community Living (ECCL), Page 55.

European Co-operation in Anthroposophical Curative Education and Social Therapy (ECCE), Page 59.

European Deafblind Network (EDbN), Page 60.

European Disability Forum (EDF), Page 62.

European Federation of Hard of Hearing People (EFHOH), Page 72.

European Federation of Road Traffi c Victims (FEVR), Page 80.

European League of Stuttering Associations (ELSA), Page 94.

European Network on Independent Living (ENIL), Page 107.

European Spinal Cord Injury Federation (ESCIF), Page 119.

European Union of the Deaf (EUD), Page 120.

EuroTinnitus Association (EuroTA), Page 125.

Hear-it AISBL (Hear-it), Page 137.

Retina International , Page 167.

Social Firms Europe CEFEC (CEFEC), Page 173.

FAMILIES AND HEALTHConfederation of Family Organisations in the European Union (COFACE), Page 22.

European Family Therapy Association (EFTA), Page 67.

European Federation of Associations of Families of People with Mental Illness (EUFAMI), Page 69.


Indexes / specialisations


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GASTROINTESTINALAssociation of European Coeliac Societies (AOECS), Page 13.

European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA), Page 71.

European Ostomy Association (EOA), Page 109.

GENDER HEALTHEuropean Institute of Women’s Health (EIWH), Page 90.

European Men’s Health Forum (EMHF), Page 99.

GENERAL HEALTHCAREEuropean Patients Empowerment for Customised Solutions (EPECS), Page 111.

European Patients’ Forum (EPF), Page 112.

Health Care Without Harm Europe (HCWH Europe), Page 135.

Iatrogenic Europe Unite (IEU-Alliance), Page 140.

International Alliance of Patients’ Organizations (IAPO), Page 142.

GENETIC AND RARE DISEASESAlfa Europe Federation e.V. (AEF), Page 5.

Alliance Sanfi lippo (ASF), Page 6.

Cystic Fibrosis Europe (CF Europe; CFE), Page 24.

DEBRA International, Page 26.

euro-Ataxia (European Federation of Hereditary Ataxias), Page 29.

European Association against Leukodystrophies (ELA), Page 42.

European Chromosome 11q Network (11q Network), Page 54.

European Down Syndrome Association (EDSA), Page 63.


European Galactosaemia Society (EGS), Page 83.

European Gaucher Alliance (EGA), Page 84.

European Marfan Support Network (EMSN), Page 97.

European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU), Page 118.

European Waldenström Macroglobulinemia Network (EWMnetwork), Page 121.

EURORDIS (European Organisation for Rare Diseases), Page 124.

Fabry International Network (FIN), Page 126.

Federation of European Williams Syndrome Associations (FEWS), Page 128.

Hypophosphatasie Europe, Page 139.

International Pompe Association (IPA), Page 151.

ORPHANET , Page 160.

Osteogenesis Imperfecta Federation Europe (OIFE), Page 161.

Patients Network for Medical Research and Health (EGAN) [Formerly European Genetic Alliances’ Network], Page 162.

Rett Syndrome Europe (RSE), Page 168.

HEART AND CIRCULATORY DISEASESArrhythmia Alliance (A-A), Page 10.

European Congenital Heart Disease Organisation (ECHDO), Page 58.

European Heart and Lung Transplant Federation (EHLTF), Page 87.

European Heart Network (EHN), Page 88.

International Cholestrol Foundation (Interchol; ICF), Page 145.

Stroke Alliance for Europe (SAFE), Page 174.

HIV/AIDSAIDS Action Europe (AAE), Page 4.

Eurasian Harm Reduction Network (EHRN), Page 28.

European AIDS Treatment Group (EATG), Page 39.

European Coalition of Positive People (ECPP), Page 56.

HIV Europe, Page 138.



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INFECTIOUSConfederation of Meningitis Organisations Inc (CoMO), Page 23.

European Polio Union (EPU), Page 114.

Polio Initiative Europa e.V. (PIE), Page 165.

LEARNING DISABILITYAutism-Europe (A-E), Page 15.

European Dyslexia Association (EDA), Page 64.

Inclusion Europe , Page 141.

LIVER DISEASESEuropean Liver Patients Association (ELPA), Page 95.

MENTAL HEALTHADHD-Europe, Page 2.

Euro-Methwork , Page 33.


European Depression Association (EDA), Page 61.

European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP), Page 105.

European Society for Mental Health and Deafness (ESMHD), Page 117.

Euro-Psy-Rehabilitation (Europsy), Page 123.

GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe; GE), Page 130.

Mental Disability Advocacy Center (MDAC), Page 156.

Mental Health Europe – Santé Mentale Europe (MHE-SME), Page 157.

National Suicide Bereavement Support Network (NSBSN), Page 159.

NEUROLOGICAL CONDITIONSAlzheimer Europe (AE), Page 7.

Cerebral Palsy-European Communities Association (CP-ECA), Page 19.

European Alliance of Neuro-Muscular Disorders Association (EAMDA), Page 41.

European Brain Council (EBC), Page 49.

European Brain Injury Society (EBIS), Page 50.

European Dystonia Federation (EDF), Page 65.

European Federation of Neurological Associations (EFNA), Page 75.

European Headache Alliance (EHA), Page 86.

European Huntington’s Disease Network (EHDN), Page 89.

European ME Alliance (EMEA), Page 98.

European Multiple Sclerosis Platform (EMSP), Page 100.

European Network of Fibromyalgia Associations (ENFA), Page 106.

European Neuro Muscular Centre (ENMC), Page 108.

European Parkinson’s Disease Association (EPDA), Page 110.

International Bureau for Epilepsy-Europe (IBE-Europe), Page 144.

SMA Europe, Page 171.

OLDER PEOPLEAGE Platform Europe (AGE), Page 3.

AMD Alliance International (AMDAI), Page 8.

European Federation of Older Persons (EURAG), Page 76.

PALLIATIVERight to Die Europe (RtD-E), Page 169.

PRIMARY IMMUNODEFICIENCIESInternational Patient Organisation for Primary Immunodefi ciencies (IPOPI), Page 149.

PUBLIC HEALTHEurasian Harm Reduction Network (EHRN), Page 28.

European Alliance for Access to Safe Medicines (EAASM), Page 40.



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European Association for Injury Prevention and Safety Promotion (EuroSafe), Page 44.



European Network for Smoking and Tobacco Prevention (ENSP), Page 104.

European Public Health Alliance (EPHA), Page 115.

Health and Environment Alliance (HEAL), Page 134.

Health First Europe (HFE), Page 136.

International Union for Health Promotion and Education/European Region (IUHPE/Euro), Page 152.

Pesticide Action Network Europe (PAN Europe), Page 163.

Smokefree Partnership (SFP), Page 172.

RENALEuropean Kidney Health Alliance (EKHA), Page 91.

European Kidney Patients’ Federation (CEAPIR), Page 92.

REPRODUCTIVE AND SEXUAL HEALTHASTRA Network (Central and East European Women’s Network for Sexual and Reproductive Health and Rights), Page 14.

EuroNGOs (European NGOs for Sexual and Reproductive Health and Rights, Population and Development), Page 34.

European Endometriosis Alliance (EEA), Page 66.

European Sexual Health Alliance (ESHA), Page 116.

European Youth Network on Sexual and Reproductive Rights (YouAct), Page 122.

Fertility Europe (FE), Page 129.

International Planned Parenthood Federation European Network (IPPF EN), Page 150.

RESPIRATORYEuropean Federation of Allergy and Airways Diseases Patients Associations (EFA), Page 68.

European Lung Foundation (ELF), Page 96.

RHEUMATIC AND MUSCULOSKELETAL DISEASESEuropean League Against Rheumatism (EULAR), Page 93.

European Network for Children with Arthritis (ENCA), Page 103.

SCIENTIFIC RESEARCHEuropean Platform for Patients’ Organisations, Science and Industry (EPPOSI), Page 113.

Hypophosphatasie Europe, Page 139.

SKINEuropean Federation of Psoriasis Associations (EUROPSO), Page 79.

URINARYWorld Federation of Incontinent Patients (WFIP), Page 176.

YOUNG PEOPLECoeliac Youth of Europe (CYE), Page 21.




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AActive Citizenship Network (ACN), Page 1.

ADHD-Europe , Page 2.

AGE Platform Europe (AGE), Page 3.

AIDS Action Europe (AAE), Page 4.

Alfa Europe Federation e.V. (AEF), Page 5.

Alliance Sanfi lippo (ASF), Page 6.

Alzheimer Europe (AE), Page 7.

AMD Alliance International (AMDAI), Page 8.

AntiCoagulation Europe (ACE), Page 9.

Arrhythmia Alliance (A-A), Page 10.

Association for Research and Training on Integration in Europe (ARFIE), Page 11.

Association of European Cancer Leagues (ECL), Page 12.

Association of European Coeliac Societies (AOECS), Page 13.

ASTRA Network (Central and East European Women’s Network for Sexual and Reproductive Health and Rights), Page 14.

Autism-Europe (A-E), Page 15.

BBEUC—the European Consumers’ Organisation , Page 16.

Brain Injured and Families - European Confederation (BIF-EC), Page 17.

CCancer Support Group asbl (CSG), Page 18.

Cerebral Palsy-European Communities Association (CP-ECA), Page 19.

CML Advocates Network , Page 20.

Coeliac Youth of Europe (CYE), Page 21.

Confederation of Family Organisations in the European Union (COFACE), Page 22.

Confederation of Meningitis Organisations Inc (CoMO), Page 23.

Cystic Fibrosis Europe (CF Europe; CFE), Page 24.

DDas Lebenshaus e.V. , Page 25.

DEBRA International , Page 26.

Disabled Peoples’ International-Europe (DPI-Europe), Page 27.

EEurasian Harm Reduction Network (EHRN), Page 28.

euro-Ataxia (European Federation of Hereditary Ataxias), Page 29.

Eurocare (European Alcohol Policy Alliance), Page 30.

Eurocarers (European Association Working for Carers), Page 31.

Eurochild , Page 32.

Indexes / list of entries

List of entries


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Euro-Methwork , Page 33.

EuroNGOs (European NGOs for Sexual and Reproductive Health and Rights, Population and Development), Page 34.

EUROPA DONNA—the European Breast Cancer Coalition (ED), Page 35.

Europa Uomo—the European Prostate Coalition (EUomo), Page 36.

europacolon (EC), Page 37.


European AIDS Treatment Group (EATG), Page 39.

European Alliance for Access to Safe Medicines (EAASM), Page 40.

European Alliance of Neuro-Muscular Disorders Association (EAMDA), Page 41.

European Association against Leukodystrophies (ELA), Page 42.

European Association for Children in Hospital (EACH), Page 43.

European Association for Injury Prevention and Safety Promotion (EuroSafe), Page 44.

European Association of Cochlear Implant Users (EURO-CIU), Page 45.

European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders (EPOS), Page 46.

European Association of Service Providers for Persons with Disabilities (EASPD), Page 47.

European Blind Union (EBU), Page 48.

European Brain Council (EBC), Page 49.

European Brain Injury Society (EBIS), Page 50.

European CanCer Organisation (ECCO), Page 51.

European Cancer Patient Coalition (ECPC), Page 52.

European Cervical Cancer Association (ECCA), Page 53.

European Chromosome 11q Network (11q Network), Page 54.

European Coalition for Community Living (ECCL), Page 55.

European Coalition of Positive People (ECPP), Page 56.


European Congenital Heart Disease Organisation (ECHDO), Page 58.

European Co-operation in Anthroposophical Curative Education and Social Therapy (ECCE), Page 59.

European Deafblind Network (EDbN), Page 60.

European Depression Association (EDA), Page 61.

European Disability Forum (EDF), Page 62.

European Down Syndrome Association (EDSA), Page 63.

European Dyslexia Association (EDA), Page 64.

European Dystonia Federation (EDF), Page 65.

European Endometriosis Alliance (EEA), Page 66.

European Family Therapy Association (EFTA), Page 67.

European Federation of Allergy and Airways Diseases Patients Associations (EFA), Page 68.

European Federation of Associations of Families of People with Mental Illness (EUFAMI), Page 69.


European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA), Page 71.

European Federation of Hard of Hearing People (EFHOH), Page 72.

European Federation of Homeopathic Patients’ Associations (EFHPA), Page 73.

European Federation of National Organisations working with the Homeless (FEANTSA), Page 74.

European Federation of Neurological Associations (EFNA), Page 75.

European Federation of Older Persons (EURAG), Page 76.

European Federation of Parents of Hearing-Impaired Children (FEPEDA), Page 77.

European Federation of Patients’ Associations for Anthroposophic Medicine (EFPAM), Page 78.

European Federation of Psoriasis Associations (EUROPSO), Page 79.


European Federation of Unpaid Parents and Carers at Home (FEFAF), Page 81.


European Galactosaemia Society (EGS), Page 83.

European Gaucher Alliance (EGA), Page 84.

European Haemophilia Consortium (EHC), Page 85.

European Headache Alliance (EHA), Page 86.

European Heart and Lung Transplant Federation (EHLTF), Page 87.



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European Heart Network (EHN), Page 88.

European Huntington’s Disease Network (EHDN), Page 89.

European Institute of Women’s Health (EIWH), Page 90.

European Kidney Health Alliance (EKHA), Page 91.

European Kidney Patients’ Federation (CEAPIR), Page 92.

European League Against Rheumatism (EULAR), Page 93.

European League of Stuttering Associations (ELSA), Page 94.

European Liver Patients Association (ELPA), Page 95.

European Lung Foundation (ELF), Page 96.

European Marfan Support Network (EMSN), Page 97.

European ME Alliance (EMEA), Page 98.

European Men’s Health Forum (EMHF), Page 99.

European Multiple Sclerosis Platform (EMSP), Page 100.

European Mutual-Help Network for Alcohol-Related Problems (EMNA), Page 101.

European Myeloma Platform (EMP), Page 102.

European Network for Children with Arthritis (ENCA), Page 103.

European Network for Smoking and Tobacco Prevention (ENSP), Page 104.

European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP), Page 105.

European Network of Fibromyalgia Associations (ENFA), Page 106.

European Network on Independent Living (ENIL), Page 107.

European Neuro Muscular Centre (ENMC), Page 108.

European Ostomy Association (EOA), Page 109.

European Parkinson’s Disease Association (EPDA), Page 110.

European Patients Empowerment for Customised Solutions (EPECS), Page 111.

European Patients’ Forum (EPF), Page 112.

European Platform for Patients’ Organisations, Science and Industry (EPPOSI), Page 113.

European Polio Union (EPU), Page 114.

European Public Health Alliance (EPHA), Page 115.

European Sexual Health Alliance (ESHA), Page 116.

European Society for Mental Health and Deafness (ESMHD), Page 117.

European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU), Page 118.

European Spinal Cord Injury Federation (ESCIF), Page 119.

European Union of the Deaf (EUD), Page 120.

European Waldenström Macroglobulinemia Network (EWMnetwork), Page 121.


Euro-Psy-Rehabilitation (Europsy), Page 123.

EURORDIS (European Organisation for Rare Diseases), Page 124.

EuroTinnitus Association (EuroTA), Page 125.

FFabry International Network (FIN), Page 126.

Federation of European Scleroderma Associations (FESCA), Page 127.

Federation of European Williams Syndrome Associations (FEWS), Page 128.

Fertility Europe (FE), Page 129.

GGAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe; GE), Page 130.

Global GIST Network (GGN), Page 131.

Global Lung Cancer Coalition (GLCC), Page 132.

HHealth Action International-Europe (HAI-Europe), Page 133.

Health and Environment Alliance (HEAL), Page 134.

Health Care Without Harm Europe (HCWH Europe), Page 135.

Health First Europe (HFE), Page 136.

Hear-it AISBL (Hear-it), Page 137.



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HIV Europe , Page 138.

Hypophosphatasie Europe , Page 139.

IIatrogenic Europe Unite (IEU-Alliance), Page 140.

Inclusion Europe , Page 141.

International Alliance of Patients’ Organizations (IAPO), Page 142.

International Brain Tumour Alliance (IBTA), Page 143.

International Bureau for Epilepsy-Europe (IBE-Europe), Page 144.

International Cholestrol Foundation (Interchol; ICF), Page 145.

International Diabetes Federation-European Region (IDF-Europe), Page 146.

International Federation for Spina Bifi da and Hydrocephalus (IF), Page 147.

International Osteoporosis Foundation (IOF), Page 148.

International Patient Organisation for Primary Immunodefi ciencies (IPOPI), Page 149.

International Planned Parenthood Federation European Network (IPPF EN), Page 150.

International Pompe Association (IPA), Page 151.

International Union for Health Promotion and Education/European Region (IUHPE/Euro), Page 152.

LLeukaNET e.V. [Formerly Leukämie-Online e.V.], Page 153.

Lupus Europe , Page 154.

Lymphoma Coalition (LC), Page 155.

MMental Disability Advocacy Center (MDAC), Page 156.

Mental Health Europe – Santé Mentale Europe (MHE-SME), Page 157.

Myeloma Euronet (ME), Page 158.

NNational Suicide Bereavement Support Network (NSBSN), Page 159.

OORPHANET , Page 160.

Osteogenesis Imperfecta Federation Europe (OIFE), Page 161.

PPatients Network for Medical Research and Health (EGAN) [Formerly European Genetic Alliances’ Network], Page 162.

Pesticide Action Network Europe PAN Europe, Page 163.

Platform of European Social NGOs (Social Platform), Page 164.

Polio Initiative Europa e.V. (PIE), Page 165.

RRare Cancers Europe (RCE) [Formerly European Action Against Rare Cancers; EAARC], Page 166.

Retina International , Page 167.

Rett Syndrome Europe (RSE), Page 168.

Right to Die Europe (RtD-E), Page 169.

SSarcoma Patients EuroNet Association (SPAEN), Page 170.

SMA Europe , Page 171.

Smokefree Partnership (SFP), Page 172.

Social Firms Europe CEFEC (CEFEC), Page 173.

Stroke Alliance for Europe (SAFE), Page 174.

TThalassaemia International Federation (TIF), Page 175.

WWorld Federation of Incontinent Patients (WFIP), Page 176.



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(11q Network), European Chromosome 11q Network, Page 54.

A(A-A), Arrhythmia Alliance, Page 10.

(AAE), AIDS Action Europe, Page 4.

(ACE), AntiCoagulation Europe, Page 9.

(ACN), Active Citizenship Network, Page 1.

(AE), Alzheimer Europe, Page 7.

(A-E), Autism-Europe, Page 15.

(AEF), Alfa Europe Federation e.V., Page 5.

(AGE), AGE Platform Europe, Page 3.(AMDAI), AMD Alliance International, Page 8.

(AOECS), Association of European Coeliac Societies, Page 13.

(ARFIE), Association for Research and Training on Integration in Europe, Page 11.

(ASF), Alliance Sanfi lippo, Page 6.

B(BIF-EC), Brain Injured and Families - European Confederation, Page 17.

C(CEAPIR), European Kidney Patients’ Federation, Page 92.

(CEFEC), Social Firms Europe CEFEC, Page 173.

(Central and East European Women’s Network for Sexual and Reproductive Health and Rights), ASTRA Network, Page 14.

(CF Europe; CFE), Cystic Fibrosis Europe, Page 24.

(COFACE), Confederation of Family Organisations in the European Union, Page 22.

(CoMO), Confederation of Meningitis Organisations Inc, Page 23.

(CP-ECA), Cerebral Palsy-European Communities Association, Page 19.

(CSG), Cancer Support Group asbl, Page 18.

(CYE), Coeliac Youth of Europe, Page 21.

D(DPI-Europe), Disabled Peoples’ International-Europe, Page 27.

E(E.S.PKU), European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria, Page 118.

(EAASM), European Alliance for Access to Safe Medicines, Page 40.

(EACH), European Association for Children in Hospital, Page 43.

(EAMDA), European Alliance of Neuro-Muscular Disorders Association, Page 41.

(EASPD), European Association of Service Providers for Persons with Disabilities, Page 47.

(EATG), European AIDS Treatment Group, Page 39.

Indexes / list of acronyms

List of acronyms


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(EBC), European Brain Council, Page 49.

(EBIS), European Brain Injury Society, Page 50.

(EBU), European Blind Union, Page 48.

(EC), europacolon, Page 37.

(ECCA), European Cervical Cancer Association, Page 53.

(ECCE), European Co-operation in Anthroposophical Curative Education and Social Therapy, Page 59.

(ECCL), European Coalition for Community Living, Page 55.

(ECCO), European CanCer Organisation, Page 51.

(ECHDO), European Congenital Heart Disease Organisation, Page 58.

(ECL), Association of European Cancer Leagues, Page 12.

(ECPC), European Cancer Patient Coalition, Page 52.

(ECPP), European Coalition of Positive People, Page 56.

(ED), EUROPA DONNA—the European Breast Cancer Coalition, Page 35.

(EDA), European Depression Association, Page 61.

(EDA), European Dyslexia Association, Page 64.

(EDbN), European Deafblind Network, Page 60.

(EDF), European Disability Forum, Page 62.

(EDF), European Dystonia Federation, Page 65.

(EDSA), European Down Syndrome Association, Page 63.

(EEA), European Endometriosis Alliance, Page 66.

(EFA), European Federation of Allergy and Airways Diseases Patients Associations, Page 68.

(EFAPH), European Federation of Associations of Patients with Haemochromatosis, Page 70.

(EFCCA), European Federation of Crohn’s and Ulcerative Colitis Associations, Page 71.

(EFCNI), European Foundation for the Care of Newborn Infants, Page 82.

(EFHOH), European Federation of Hard of Hearing People, Page 72.

(EFHPA), European Federation of Homeopathic Patients’ Associations, Page 73.

(EFNA), European Federation of Neurological Associations, Page 75.

(EFPAM), European Federation of Patients’ Associations for Anthroposophic Medicine, Page 78.

(EFTA), European Family Therapy Association, Page 67.

(EGA), European Gaucher Alliance, Page 84.

(EGAN) [Formerly European Genetic Alliances’ Network], Patients Network for Medical Research and Health, Page 162.

(EGS), European Galactosaemia Society, Page 83.

(EHA), European Headache Alliance, Page 86.

(EHC), European Haemophilia Consortium, Page 85.

(EHDN), European Huntington’s Disease Network, Page 89.

(EHLTF), European Heart and Lung Transplant Federation, Page 87.

(EHN), European Heart Network, Page 88.

(EHRN), Eurasian Harm Reduction Network, Page 28.

(EIWH), European Institute of Women’s Health, Page 90.

(EKHA), European Kidney Health Alliance, Page 91.

(ELA), European Association against Leukodystrophies, Page 42.

(ELF), European Lung Foundation, Page 96.

(ELPA), European Liver Patients Association, Page 95.

(ELSA), European League of Stuttering Associations, Page 94.

(EMEA), European ME Alliance, Page 98.

(EMHF), European Men’s Health Forum, Page 99.

(EMNA), European Mutual-Help Network for Alcohol-Related Problems, Page 101.

(EMP), European Myeloma Platform, Page 102.

(EMSN), European Marfan Support Network, Page 97.

(EMSP), European Multiple Sclerosis Platform, Page 100.

(ENCA), European Network for Children with Arthritis, Page 103.

(ENFA), European Network of Fibromyalgia Associations, Page 106.

(ENIL), European Network on Independent Living, Page 107.

(ENMC), European Neuro Muscular Centre, Page 108.

(ENSP), European Network for Smoking and Tobacco Prevention, Page 104.



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(ENUSP), European Network of (Ex-) Users and Survivors of Psychiatry, Page 105.

(EOA), European Ostomy Association, Page 109.

(EPDA), European Parkinson’s Disease Association, Page 110.

(EPECS), European Patients Empowerment for Customised Solutions, Page 111.

(EPF), European Patients’ Forum, Page 112.

(EPHA), European Public Health Alliance, Page 115.

(EPOS), European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders, Page 46.

(EPPOSI), European Platform for Patients’ Organisations, Science and Industry, Page 113.

(EPU), European Polio Union, Page 114.

(ESCIF), European Spinal Cord Injury Federation, Page 119.

(ESHA), European Sexual Health Alliance, Page 116.

(ESMHD), European Society for Mental Health and Deafness, Page 117.

(EUD), European Union of the Deaf, Page 120.

(EUFAMI), European Federation of Associations of Families of People with Mental Illness, Page 69.

(EULAR), European League Against Rheumatism, Page 93.

(EUomo), Europa Uomo—the European Prostate Coalition, Page 36.

(EURAD), Europe Against Drugs, Page 38.

(EURAG), European Federation of Older Persons, Page 76.

(Euro Coop), European Community of Consumer Co-operatives, Page 57.

(EURO-CIU), European Association of Cochlear Implant Users, Page 45.

(European Alcohol Policy Alliance), Eurocare, Page 30.

(European Association Working for Carers), Eurocarers, Page 31.

(European Federation of Hereditary Ataxias), euro-Ataxia, Page 29.

(European NGOs for Sexual and Reproductive Health and Rights, Population and Development), EuroNGOs, Page 34.

(European Organisation for Rare Diseases), EURORDIS, Page 124.

(EUROPSO), European Federation of Psoriasis Associations, Page 79.

(Europsy), Euro-Psy-Rehabilitation, Page 123.

(EuroSafe), European Association for Injury Prevention and Safety Promotion, Page 44.

(EuroTA), EuroTinnitus Association, Page 125.

(EWMnetwork), European Waldenström Macroglobulinemia Network, Page 121.

F(FE), Fertility Europe, Page 129.

(FEANTSA), European Federation of National Organisations working with the Homeless, Page 74.

(FEFAF), European Federation of Unpaid Parents and Carers at Home, Page 81.

(FEPEDA), European Federation of Parents of Hearing-Impaired Children, Page 77.

(FESCA), Federation of European Scleroderma Associations, Page 127.

(FEVR), European Federation of Road Traffi c Victims, Page 80.

(FEWS), Federation of European Williams Syndrome Associations, Page 128.

(FIN), Fabry International Network, Page 126.

G(GGN), Global GIST Network, Page 131.

(GLCC), Global Lung Cancer Coalition, Page 132.

(Global Alliance of Mental Illness Advocacy Networks-Europe; GE), GAMIAN-Europe, Page 130.

H(HAI-Europe), Health Action International-Europe, Page 133.

(HCWH Europe), Health Care Without Harm Europe, Page 135.

(HEAL), Health and Environment Alliance, Page 134.

(Hear-it), Hear-it AISBL, Page 137.

(HFE), Health First Europe, Page 136.



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I(IAPO), International Alliance of Patients’ Organizations, Page 142.

(IBE-Europe), International Bureau for Epilepsy-Europe, Page 144.

(IBTA), International Brain Tumour Alliance, Page 143.

(IDF-Europe), International Diabetes Federation-European Region, Page 146.

(IEU-Alliance), Iatrogenic Europe Unite, Page 140.

(IF), International Federation for Spina Bifi da and Hydrocephalus, Page 147.

(Interchol; ICF), International Cholestrol Foundation, Page 145.

(IOF), International Osteoporosis Foundation, Page 148.

(IPA), International Pompe Association, Page 151.

(IPOPI), International Patient Organisation for Primary Immunodefi ciencies, Page 149.

(IPPF EN), International Planned Parenthood Federation European Network, Page 150.

(IUHPE/Euro), International Union for Health Promotion and Education/European Region, Page 152.

L(LC), Lymphoma Coalition, Page 155.

M(MDAC), Mental Disability Advocacy Center, Page 156.

(ME), Myeloma Euronet, Page 158.

(MHE-SME), Mental Health Europe – Santé Mentale Europe, Page 157.

N(NSBSN), National Suicide Bereavement Support Network, Page 159.

O(OIFE), Osteogenesis Imperfecta Federation Europe, Page 161.

P(PAN Europe), Pesticide Action Network Europe, Page 163.

(PIE), Polio Initiative Europa e.V., Page 165.

R(RCE) [Formerly European Action Against Rare Cancers; EAARC], Rare Cancers Europe, Page 166.

(RSE), Rett Syndrome Europe, Page 168.

(RtD-E), Right to Die Europe, Page 169.

S(SAFE), Stroke Alliance for Europe, Page 174.

(SFP), Smokefree Partnership, Page 172.

(Social Platform), Platform of European Social NGOs, Page 164.

(SPAEN), Sarcoma Patients EuroNet Association, Page 170.

T(TIF), Thalassaemia International Federation, Page 175.

W(WFIP), World Federation of Incontinent Patients, Page 176.

Y(YouAct), European Youth Network on Sexual and Reproductive Rights, Page 122.



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Following the overwhelming support for previous editions of this publication, and the positive responses they have received, Burson-Marsteller Brussels is delighted and proud to publish this, the fourth edition of the European Patient Group Directory. The Directory and its dissemination across the EU are just one indication of the important role that patient groups play today in the development of European Union and member state health policy.

For this fourth edition of the European Patient Group Directory, Burson-Marsteller and Pa-tientView have again included extensive information about each group’s presence in Brussels and their campaigns. The new edition further includes 176 new groups and their profi les. As such, we hope it will prove once again to be a useful resource to all those involved in the EU health policy debate, including patients and patient groups themselves, decision and policy makers, offi cials, companies, NGOs and other stakeholders.

EU health policy is facing considerable challenges – not least those caused by the economic crisis and the associated austerity measures. This is forcing several governments to fi nd ways of re-de-signing health systems to reduce expenditure without compromising the care and treatment of those who need it most.

European citizens expect the EU to help address the health challenges they face every day. From pandemic preparedness to patient mobility, comparing and contrasting best practice in health-care, to raising standards across Europe for prevention, screening and management of Europe’s major diseases, to measures to tackle the scourge of tobacco and the abuse of alcohol, there is much that the EU can do. Indeed, in many areas of health policy, it has become apparent that the scale of the challenges is far too great to be addressed by member states alone. Europe can and should act.

We both hope that you fi nd this Directory useful.

David Earnshaw Ane Sofi e Böhm NielsenCEO Burson-Marsteller Brussels Managing Director Healthcare, Burson-Marsteller Brussels

Preface from the publisher

Burson-Marstellerhttp://www.bmbrussels.eu37 Square de Meeûs1000 Brussels Belgium

T: +32-(0)2-743-66-11email: [email protected]://www.bmbrussels.eu


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Introduction

This 4th edition of the Directory holds overview information on 176 health-oriented NGOs that operate at a pan-European level. Most of the featured organisations were in the previous edition, although a few are fresh to the Directory. A handful of groups in the 2009 Directory have ceased to exist.

New categories of information in the 2012 Directory

The 2012 Directory carries fi ve novel types of information about each organisation, including: the organisation’s Brussels-based representatives; campaigns conducted (or supported by) the organ-isation; a forward-thinking quote summarising plans for 2012 and ahead; the organisation’s links with EU bodies; and current EU-funded projects in which the organisation is participating.

How the data in the Directory was collected

Just under half of the groups in the Directory contributed to their entries. Information about all of the groups was drawn primarily from their own websites. The data was supplemented by information from the websites of the groups’ members and umbrella organisations, and by other trustworthy online public resources—in particular:

—The ‘Patient Group Funding’ page on the GSK website.

—The Charity Commission website (for UK-headquartered groups).

—The Register of the European Transparency Initiative (ETI), on the Europa website

[http://europa.eu/transparency-register/index_en.htm].

The EU’s website, Europa, proved to be of value for three further sets of information in the Direc-tory. The Projects Database of the Executive Agency for Health and Consumers (EAHC) supplied details about the more recent EU-funded projects in which patient groups participate; the DG Health and Consumers site listed pan-European groups in the Directorate-General’s EU Health Policy Forum; and the European Medicines Agency site noted pan-European groups involved in the Agency’s activities.

Selection of groups for the Directory

PatientView has developed criteria to indicate whether an organisation is eligible for entry in the Directory (though some degree of personal judgement inevitably comes into play):

Preface from the author

PatientViewWoodhouse PlaceUpper WoodhouseKnightonPowys, LD7 1NG, UK

T: +44-(0)1547-520-965 email: [email protected]://www.patient-view.com


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The Directory’s defi nition of the phrase ‘patient group’ is broad, taking in organisations that spe-cialise in carers, children, consumers, disability, older people, poverty, or research—if the groups are especially concerned with issues of health. The key requirement for inclusion in the Directory is an organisational interest in health advocacy, and a relevance to patients. That said, the Direc-tory excludes healthcare organisations that clearly do not represent the patient perspective (such as medical professional bodies and societies).

The Directory considers an organisation ‘pan-European’ if it has members or interests in three or more European countries. ‘Europe’ is defi ned as EU member states, and countries with borders adjacent to the EU. International (that is, worldwide/global) groups are examined for inclusion on a case-by-case basis. The presence of European member organisations is not enough to guar-antee an international group’s entry into the Directory. International groups should either exert a strong presence in Europe, or possess an effective (and, at least, semi-independent) European arm.

Most of Europe’s citizens’ and consumers’ groups devote only a small proportion of their energies to healthcare, and have not been placed in the Directory. But exceptions do occur. The fi rst entry in the publication—Rome-based Active Citizenship Network—is an example of a citizens’ group closely linked with healthcare issues.

One key quality of any advocacy group is its ability to communicate with the public and policy-makers—which is why only groups with a functioning website are listed in the Directory. A fi nal requirement: groups need to be seen to be recently active—and their activities recorded on their websites—to ensure listing in the Directory.

European Commission terminology mentioned in the Directory

DG SANCO is an acronym for the European Commission Directorate-General for Health and Consumers. Funding agencies mentioned in the Directory, such as the Executive Agency for Health and Consumers (EAHC), are also part of the European Commission.

Words of thanks

PatientView would like to thank the individuals and organisations helping in the creation of this Directory, particularly the many patient groups providing support and time, David Earnshaw, Sylvia Staszak, Sofi a Marcha of Burson-Marsteller, Mike Kenny for his design input, and the Eu-ropean Health Forum Gastein.

Clive NeadEditor, European Patient Group DirectorySeptember 2011

Preface from the author


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Organisation’s logo

or an image representing an aspect of the organisation’s outlook or activities

(images provided by Henry Nead of PatientView, or the National Institutes of Health, or Wikimedia Commons)

Activities and campaigns

Geographic areas of the organisation’s operation: Europe; parts of Europe; or beyond Europe.

Key activities of the organisation: Includes a short description of the organisation and its main aims.

Key campaigns of the organisation: Campaigns that are either initiated and run by the organisation, or some other campaign which the organisation particularly supports.

Short quotation from the organisation, summarising its objectives for 2012 (and sometimes beyond)

Current EU-funded projects in which the organisation is participating (or sometimes leading): Information includes, when available, the title and acronym of project; date of project duration; and funding source.

Members and memberships

Number of the organisation’s member groups: Most of the organisations have member groups; a few just maintain informal links with other groups.

Countries of the organisation’s member groups: Only member groups based in Europe are included (some groups also have members in Asia, Africa, the Middle East, or worldwide).

Groups to which the organisation is affi liated: Organisation’s own membership of umbrella organisations.

Current offi cial affi liations with the EU: Links and relations with EU bodies such as the European Commission, European Parliament, European Medicines Agency (EMA), etc.

Revenue

Most recent yearly revenue: Organisation’s most recent reported annual funding amount/ turnover/revenue, in Euros (other currencies converted at the prevailing exchange rate). Year given when publicly known.

Pharmaceutical funding: Sources of funding if from pharmaceutical companies, pharma trade associations, or pharma foundations. Year and names given when publicly known.

Main sources of funding: Top two or three (sometimes more) sources of revenue. Year and amounts given when publicly known.

Key to data

Address of headquarters

General contact telephone number:

Fax number (if used):

Contact email for the general public:

Senior executive or senior contact person

Their position within the organisation (job title)

Name of organisation’s representative in Brussels

Position or job title of representative in Brussels

Email address of representative in Brussels

Name of organisation(Acronym)Primary website

Register for the latest Engage event at www.engagehealth.eu

Join us

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Building a dialogue across healthcare| patients | providers | industry | policymakers |

MakingConnections

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‘What does value reallymean to patients? - A new model for pharma’

Engage Health AllianceEurope is an independentorganisation that aims to facilitate interactionbetween a broad range of stakeholders andorganisations interested in improving patient careacross Europe. We believethat most challenges inhealthcare requirecollaborative approaches.Our aim is to play aconstructive role byproviding platforms fordebate, consensus, andaction-planning—all centredaround agendas defined bypatients as ‘most important’

• Workshops: Exploring keyissues and shaping policyfor patients

• Roundtables: Connectingall relevant stakeholdersaround specific diseasesand healthcare challenges

• Membership: Join theconversation and benefitfrom cross-stakeholderopportunities.

CONFE

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Engage Health Alliance - Europe Ltd • 12 High Street, Stevenage, Herts SG1 3EJ, UKTel +44 (0)1438 870 066 • e-mail: [email protected]

EntriesIn aphabetical order


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Civic and Consumer with Interest in Healthcare

Via Flaminia, 5300196 RomeItaly

T: +39-(0)6-36-71-81

F: +39-(0)6-36-71-83-33

Email: [email protected]

Main contact: Teresa Petrangolini

Position of main contact: Director


Geographic areas of operation: Europe.

Key activities: Active Citizenship Network (ACN) is the European network promoted by the Italian non-profi t organization Cittadinanzattiva. ACN’s key activity is related to the healthcare service in Europe. The group promotes campaigns on behalf of European patient rights, bringing together health stakeholders to discuss the conditions of citizens in the healthcare services in Europe. ACN strives to gain Europe-wide legal status for patients’ rights.

Key campaigns: – “European Patients’ Rights Day” which is a European celebration to highlight the need of patients’ rights in Europe. The celebration is a conference that normally is held in Brussels in the presence of associations’ delegates, representing the interests of patients, the public, policymakers, healthcare providers, legislators, payers, and industry. – “Building Active Citizenship in Europe: an Experience in Mentoring”, with the purpose to test and develop innovative transnational exchange schemes with a view to building long-term partnership between civil society organizations operating in different participating countries. – “Future active citizens: volunteering as an exercise of democracy”, with the main objective of increasing young people’s desire to become active citizens. ACN informs them about the meaning and concrete practice of volunteering, based on the direct experience of civic and voluntary organizations.

Current EU-funded projects: “Future active citizens: volunteering as an exercise of democracy”, 2011-2012, funded by the Europe for Citizens Programme 2007-2013 of the Education, Audiovisual and

Culture Executive Agency (EACEA).


Number of member groups: Partnerships (rather than membership) with 105 organisations from 28 European countries.

Countries of member groups: Partner groups in: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Macedonia, Malta, Netherlands, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Turkey, UK.

Groups to which organisation is affi liated: Cittadinanzattiva.

Offi cial on-going affi liations with the EU: Member of the DG SANCO EU Health Policy Forum (EUHPF).

Revenue

Pharmaceutical funding: 2011: F. Hoffmann-La Roche Ltd, MSD Italia, Novartis Italia-Novartis Farma Spa, Fondazione Eli Lilly per la ricerca medica onlus.

Main sources of funding: 2011: pharmaceutical companies; European Commission (DG Education and Culture), Executive Agency for Health and Consumers (EAHC), European Commission (DG Education and Culture), Unicredit Group, Sorgenia.

Active Citizenship Network(ACN)http://www.activecitizenship.net


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Mental Health

Avenskouter 13B-9820 MerelbekeBelgium

T: +32-4-736-172-789


Main contact: Rita Bollaert

Position of main contact: Coordinator

Name of representative in Brussels: Joanne Norris

Position of representative in Brussels: Vice-President

Contact for representative in Brussels: [email protected]



Key activities: Advances the rights of people affected by attention-defi cit hyperactivity disorder (ADHD) and co-morbid conditions, and advocates with European institutions for its members on the topic of ADHD, with a view to affecting policy. Promotes ADHD awareness and information on a European level, and facilitates the efforts of national and regional ADHD organisations in Europe to acquire funding.


Number of member groups: 29 member associations from 21 European countries.

Countries of member groups: Austria, Belgium (4), Croatia (2), Cyprus, Denmark, Finland, France, Germany (2), Greece (2), Hungary, Ireland (2), Italy, Luxembourg, Malta, Netherlands (2), Norway, Poland, Spain (2), Sweden, Turkey.

Groups to which organisation is affi liated: Mental Health Europe (MHE); World Federation of ADHD.

Revenue

Most recent yearly revenue: €4,500 (2010), according to the Register of the European Transparency Initiative (ETI).

Pharmaceutical funding: ADHD-Europe states that it “does not accept funding from pharmaceutical companies, but will collaborate in the creation of educational materials and projects funded by such companies, provided these are not linked to promotion of a particular product.”

Main sources of funding: Membership contributions. Looking for co-funding opportunities from the European Commission.

ADHD-Europehttp://www.adhdeurope.eu


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Rue Froissart 1111040 BrusselsBelgium

T: +32-2-280-14-70

F: +32-2-280-15-22


Main contact: Anne-Sophie Parent

Position of main contact: Secretary General

Name of representative in Brussels: Anne-Sophie Parent

Position of representative in Brussels: Secretary General




Key activities: Aims to voice and promote the interests of older people in the EU, and to raise awareness of the issues that concern them the most. Involved in a range of policy and information activities to put older people’s issues on the EU agenda, and increase networking among older people’s groups.

Key campaigns: Leads the EU Coalition for the ‘European Year 2012 on Active Ageing and Solidarity Between Generations’.

Objectives for 2012 onwards: “AGE will be focusing on the ‘2012 European Year for Active Ageing and Solidarity between Generations’. AGE’s main goal for the Year and beyond is an age-friendly environment across the EU. Our Roadmap details the activities that should be launched in 2012 to achieve an age-friendly EU by 2020.”

Current EU-funded projects: Lead role in ‘Well-Being and Dignity of Older People (WeDO)’, 2010-2012, funded by DG Employment, Social Affairs and Inclusion. Partner in the following eight projects. Four projects funded by the Information Communication Technologies Policy Support Programme (ICT-PSP), under the Competitiveness and Innovation Framework Programme (CIP): ‘Atis4All’, 2011-2013; ‘Dreaming’, 2008-2011; ‘eAccess+’, 2010-2013; and ‘Home Sweet Home’, 2010-2012. Three projects funded by the 7th Framework Programme: ‘FuturAGE’, 2009-2011; ‘OASIS’,

2008-2012; and ‘Veritas’, 2010-2012. Funding and date details for the project ‘European Ambient Assisted Living Innovation Alliance (Aaliance) 2’ not yet available.


Number of member groups: Approximately 160 member organisations from 28 European countries.

Countries of member groups: Albania, Austria (2), Belgium (16), Bulgaria (3), Cyprus (3), Czech Republic, Denmark, Estonia, Finland (2), France (25), Germany (6), Greece, Hungary (3), Ireland (8), Italy (25), Latvia, Lithuania (3), Malta (2), Netherlands (8), Poland (2), Portugal (3), Slovakia, Slovenia (5), Spain (9), Sweden (2), Switzerland (2), Turkey (2), UK (23).

Groups to which organisation is affi liated: European Anti-Poverty Network (EAPN); European Public Health Alliance (EPHA); Platform of European Social NGOs (Social Platform).

Current affi liations with the EU: Member of the Steering Group of the European Innovation Partnership (EIP) on Active and Healthy Ageing (run by DG SANCO and DG Information Society and Media). Member of the DG SANCO EU Health Policy Forum (EUHPF).

Revenue

Most recent yearly revenue: €1.5m (2010).

Main sources of funding: 2010: DG Employment, Social Affairs and Equal Opportunities PROGRESS Programme (€1.2m); membership fees and donations (€122,000).

AGE Platform Europe(AGE)http://www.age-platform.eu

Older People


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AIDS Action Europe Offi ceSoa Aids Nederland (STI AIDS Netherlands)Keizersgracht 3921016 GB AmsterdamNetherlands

T: +31-(0)20-626-26-69

F: +31-(0)20-627-52-21

Email: offi [email protected]

Main contact: Martine de Schutter

Position of main contact: Executive Co-ordinator



Key activities: Aims to infl uence AIDS policies at global, European, national, and local levels through advocacy and agenda-setting. Works to ensure that the voices of NGOs are heard by policy makers, European institutions and key stakeholders. Develops linking and learning between NGOs and other stakeholders.

Objectives for 2012 onwards: “The European Commission has renewed its commitment to a strategy on combating HIV/AIDS in the EU for 2009-2013. But we need to overcome the funding crisis for most-at-risk groups, for prevention, and for at-risk people in central and Eastern Europe (CEE).”


Number of member groups: 411 member organisations from 33 European countries.

Countries of member groups: Albania, Austria, Belgium, Bosnia, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Macedonia, Moldova, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: International Council of AIDS Service Organizations (ICASO).

Current affi liations with the EU: Co-chairs the DG SANCO HIV/AIDS Civil Society Forum (CSF). Member of the DG SANCO EU Health Policy Forum (EUHPF).

Revenue

Most recent yearly revenue: €524,000 (2010).

Main sources of funding: EC 2nd EU Public Health Programme (2008-2013) through the Executive Agency for Health and Consumers (EAHC); Aids Fonds; ViiV Healthcare Positive ActioProgramme; Levi Strauss Foundation; MAC AIDS Fund; Open Society Foundations.

AIDS Action Europe(AAE)http://www.aidsactioneurope.org

HIV/AIDS


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Lavendelweg 1045770 MarlGermany

T: +49-2365-698260

F: +353-1-452-4341


Main contact: Kim Hovmann

Position of main contact: Secretary / Communications Offi cer



Key activities: Democratic federation of alpha-1 associations in Europe. Acts as a European information and resources network for patient-support groups and linked associations, health professionals, institutions, and industry interested in increasing their knowledge of alpha-1 antitrypsin defi ciency. Aims to ensure that affected people and their families receive access to social, psychological, and medical support.

Key campaigns: Letter-writing campaign to each country’s local MPs to create awareness of alpha-1.

Objectives for 2012 onwards: “The 27 EU Member States have committed to creating a National Plan for Rare Diseases in each country. Now is the time for the Federation and members to add the voice of alpha-1 patients to the visionaries looking forward to a healthier world.”


Number of member groups: 12 national member groups (each with 20-250 members) from 12 European countries.

Countries of member groups: Austria, Czech Republic, Denmark, France, Germany, Ireland, Italy, Norway, Portugal, Spain, Sweden, UK.

Groups to which organisation is affi liated: European Organisation for Rare Diseases (EURORDIS).

Current affi liations with the EU: Invited as lay experts by the European Medicines Agency (EMA).

Alfa Europe Federation(AEF)http://www.alphaeurope.eu

Genetic and Rare Diseases


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52 rue la Boëtie75008 ParisFrance

T: +33-(0)6-14-03-84-87

F: +33-(0)1-39-90-50-71

Email: karen.aiach@sanfi lippo-sas.com / contact@sanfi lippo-syndrome.org

Main contact: Karen Aiach

Position of main contact: Chair



Key activities: Organisation of parents of children affected by mucopolysaccharide disease type III (Sanfi llipo syndrome - MPSIII). Aims to develop, fund, and promote research into MPSIII by raising money to fund research throughout Europe. Networks parents and children with a view to sharing experiences and information, and endeavours to improve their quality of life.

Key campaigns: Supports ‘Rare Disease Day’ (every February).

Objectives for 2012 onwards: “Alliance Sanfi lippo is the leader in patient-funded scientifi c research on MPS III, and plans to continue progress.”


Number of member groups: No member associations.

Revenue

Pharmaceutical funding: None.

Main sources of funding: Association Française contre les Myopathies (AFM); Fondation Sanfi lippo Suisse.

Alliance Sanfi lippo(ASF)http://www.sanfi lippo-syndrome.org



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145 route de Thionville2611 Luxembourg

T: +352-29-79-70

F: +352-29-79-72


Main contact: Jean Georges

Position of main contact: Executive Director

Name of representative in Brussels: Annette Dumas

Position of representative in Brussels: EU Public Affairs Offi cer




Key activities: Aims to improve the care and treatment of Alzheimer patients through intensifi ed collaboration between its member associations. Raises awareness of all forms of dementia by creating a common European platform, harmonising co-operation between Alzheimer organisations throughout Europe. A source of information on all aspects of dementia.

Objectives for 2012 onwards: “In the longer term, AE is striving to become the coordination and information centre for all European organisations working in the fi eld of dementia.”

Current EU-funded projects: Partner in ‘PharmaCog’, 2010-2015, funded by the 7th Framework Programme.



Countries of member groups: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, Finland, France, Germany, Greece, Ireland, Italy (2), Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain (2), Sweden (2), Switzerland, Turkey, UK (2).

Groups to which organisation is affi liated: Alzheimer’s Disease International (ADI); European Alzheimer’s Disease Consortium (EADC); European Patients’ Forum (EPF).

Current affi liations with the EU: Works with the European Alzheimer’s Alliance, a multi-party, multinational body of Members of the European Parliament. Involved in the activities of the European Medicines Agency (EMA).

Revenue


Pharmaceutical funding: 2010: Bayer Healthcare (€310,000); Elan (€20,000); Lilly (€20,000); GSK (€35,000); Janssen-Cilag (€40,000); Lundbeck (€20,000); Novartis (€45,000); Nutricia (€15,000); Pfi zer (€50,000).

Main sources of funding: 2010: Pharmaceutical companies (€556,000); European Commission (€271,000); member organisations (€181,000); individual donors (€78,000).

Alzheimer Europe(AE)http://www.alzheimer-europe.org

Neurological Conditions


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8

6th Floor, City Gate EastTollhouse HillNottinghamNG1 5SFUK

T: +44-115-935-2100

F: +44-115-935-2001


Main contact: Narinder Sharma

Position of main contact: Chief Executive Offi cer


Geographic areas of operation: Global (including Europe).

Key activities: International organisation dedicated exclusively to macular disease. Strives to bring knowledge, help and hope to individuals and families around the world affected by age-related macular degeneration (AMD). Generates awareness and understanding of AMD, promotes the importance of education, early detection, knowledge of treatment and rehabilitation options.

Key campaigns: Runs a video-fi lm contest about macular disease and its effects. Issued a ‘Global Call to Action to Recognize Wet AMD as a Chronic Disease’. AMDAI’s ‘MD Patient Charter’, a road map for the patient life journey.


Number of member groups: 25 European member groups from 13 European countries.

Countries of member groups: Austria, Belgium, Finland, France, Germany (2), Ireland, Italy (5), Lithuania, Netherlands, Poland (2), Spain (2), Switzerland (2), UK (5).

AMD Alliance International(AMDAI)http://www.amdalliance.org

Disability / Older People


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9

PO Box 405BromleyKentBR2 9WPUK

T: +44-(0)20-8289-6875

F: +44-(0)20-8464-2417


Main contact: Eve Knight




Key activities: Committed to the prevention of thrombosis and the provision of information and support for people already receiving anticoagulant and anti-platelet therapy. Campaigns for excellence and equity of provision of healthcare.

Key campaigns: ‘Stop the Clot’. ‘Stroke Prevention on Atrial Fibrillation: a Call to Action’. ‘It’s About Time’.

Objectives for 2012 onwards: “ACE aims to continue to work for thrombosis prevention, and to ensure that information is provided for patients with the introduction of the new oral anticoagulants. ACE will work to ensure that guidelines across Europe are implemented in the prevention of stroke-related atrial fi brillation.”


Number of member groups: 3 member groups from 3 European countries.

Countries of member groups: France, Ireland, UK.

Groups to which organisation is affi liated: International Self-Monitoring Association of Anticoagulated Patients (ISMAAP).

Revenue

Most recent yearly revenue: £186,000/approximately €212,000 (2010).

Pharmaceutical funding: Sanofi -Aventis.

Main sources of funding: Sponsors and regular donors; advertising; subscriptions.

AntiCoagulation Europe(ACE)http://www.anticoagulationeurope.org

Blood Disorders


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10

PO Box 3697Stratford-Upon-AvonWarwickshireCV37 8YLUK

T: +44-(0)1789-450-787


Main contact: Trudie Lobban

Position of main contact: Founder and Chief Executive



Key activities: Coalition of charities, patient groups, patients, carers, medical groups and allied professionals that remain independent, but work together across Europe under the A-A umbrella to promote diagnosis and treatment of arrhythmias. Supports and promotes the aims and objectives of the individual groups.

Key campaigns: ‘Restart The Heart’. ‘Know Your Pulse’. Participates in ‘World Heart Rhythm Week’ (every June).

Objectives for 2012 onwards: “The partners in A-A International work for a united approach, to give greater impact for change, and awareness of arrhythmias on an international scale.”


Number of member groups: 28 partner associations from 8 European countries.

Countries of member groups: Belgium (2), Czech Republic, Germany, Ireland (3), Italy (3), Portugal (4), Sweden, UK (13).

Groups to which organisation is affi liated: International Alliance of Patients’ Organizations (IAPO).

Revenue

Most recent yearly revenue: £1m/approximately €1.1m (2009).


Main sources of funding: Foundations and trusts; UK Department of Health (DoH); a medical device company.

Arrhythmia Alliance(A-A)http://www.heartrhythmcharity.org.uk/international-area

Heart and Circulatory Diseases


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11

c/o Association des Parents d’Enfants Mentalement Handicapés (Apemh Euroformat)Square Ambiorix 32 bte 471000 Brussels, Belgium

T: +32-(0)2-230-66-93F: +32-(0)2-230-05-60Email: [email protected]

Main contact: Raymond Ceccotto

Position of main contact: President

Name of representative in Brussels: Raymond Ceccotto

Position of representative in Brussels: President




Key activities: European network that aims to improve the assistance, social integration and social services available to people with a disability (including people with learning diffi culties and psychiatric disorders). Members run training, life skills and placement courses for people with a disability who wish to fi nd work (and also train the staff who work with them).

Key campaigns: Participates in ‘European Day of People with Disabilities’ (every December).

Objectives for 2012 onwards: “ARFIE plans to continue focusing on the theme of intellectual disability and mental health issues.”

Current EU-funded projects: Partner in the second phase of ‘COMCADES’, funded by the Lifelong Learning Programme (Grundtvig Partnership) of the Education, Audiovisual and Culture Executive Agency (EACEA).


Number of member groups: 71 member associations (not all are patient groups) from 18 European countries.

Countries of member groups: Austria (3), Belgium (8), Cyprus, Czech Republic, Denmark, Finland, France (21), Germany, Greece, Ireland, Italy (9), Luxembourg (9), Malta, Netherlands, Portugal (3), Romania, Switzerland, UK (7).

Revenue

Main sources of funding: EU programmes; membership fees.

Association for Research and Training on Integration in Europe(ARFIE) http://www.arfi e.info

Disability


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12

479 Chaussée de Louvain1030 BrusselsBelgium

T: +32-2-256-2000

F: +32-2-256-2003


Main contact: Dr Wendy Yared


Name of representative in Brussels: Director

Position of representative in Brussels: Dr Wendy Yared




Key activities: Facilitates the exchange of best practices among ECL members. Promotes capacity building by organising working groups (such as the ECL Patient Support Working Group). Infl uences the EU agenda on oncology topics through lobbying.

Key campaigns: Responsible for reviving ‘European Week Against Cancer (EWAC)’ (every May). Promotes the ‘European Code Against Cancer’, an 11-point guide to cancer prevention through healthy lifestyles and screening. Member of the consortium of the ‘Tobacco-Free Europe’ campaign. Participates in ‘World Cancer Day’ (every February).

Objectives for 2012 onwards: “The ECL will focus on the lifestyle messages of the European Code Against Cancer, to seek solutions to cancer prevention through promoting healthy lifestyles and identifying national and European policies that can increase accessibility to healthy choices.”

Current EU-funded projects: Partner in ‘TobTaxy (Making Tobacco Tax Trendy)’, 2010-2013, funded by the Health Programme 2008-2013 of the Executive Agency for Health and Consumers (EAHC).


Number of member groups: 23 leagues from 19 European countries.

Countries of member groups: Belgium (2), Cyprus (2), Czech Republic, Denmark (2), Finland, Greece, Hungary, Iceland, Ireland, Italy, Luxembourg, Netherlands (2), Portugal, Romania, Slovakia, Slovenia, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: European Public Health Alliance (EPHA).

Current affi liations with the EU: Member of the DG SANCO European Alcohol and Health Forum (EAHF). Member of the DG SANCO EU Health Policy Forum (EUHPF). Coordinates prevention activities for the DG SANCO European Partnership for Action Against Cancer (EPAAC), including ‘European Week Against Cancer (EWAC)’. Provides the secretariat for the European Parliament’s MEPs Against Cancer (MAC) Group.

Revenue


Pharmaceutical funding: 2009, according to the Register of the European Transparency Initiative (ETI): Pfi zer (€4,000); Pfi zer and Novartis (€9,000 together). Johnson & Johnson, Novartis, and Pfi zer supply unrestricted educational grants to consortium members of the ‘Tobacco-Free Europe’ campaign.

Main sources of funding: 2009, according to the Register of the European Transparency Initiative (ETI): membership fees (€159,000); industry funding, the largest of which came from Garnier (€37,000). 2011: Executive Agency for Health and Consumers (EAHC) (€20,000).

Association of European Cancer Leagues(ECL)http://www.europeancancerleagues.eu/

Cancer


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13

4 rue de la Presse1000 BrusselsBelgium

T: +352-691-500-961

F: +352-26-889-796

Email: [email protected] / [email protected]

Main contact: Jean-Louis Kieffer

Position of main contact: Board member

Name of representative in Brussels: Jean-Louis Kieffer

Position of representative in Brussels: Board member




Key activities: Umbrella organisation of European coeliac societies. Co-ordinates and encourages cross-border activities and matters of common interest to members, and promotes exchange of information among members for the benefi t of Europeans affected by coeliac disease or dermatitis herpetiformis. Participates in scientifi c research.


Number of member groups: 32 member societies from 28 European countries.

Countries of member groups: Andorra, Austria, Belgium (2), Croatia, Cyprus, Czech Republic (2), Denmark, Finland, France, Germany, Greece (2), Hungary, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain (2), Sweden, Switzerland, UK.

Groups to which organisation is affi liated: European Patients’ Forum (EPF).

Revenue

Most recent yearly revenue: €55,000 (2010-2011), according to the Register of the European Transparency Initiative (ETI).

Main sources of funding: Membership fees from national coeliac associations.

Association of European Coeliac Societies(AOECS)http://www.aoecs.org

Gastrointestinal


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ASTRA Secretariatc/o Federation for Women and Family PlanningNowolipie 13/1500-150 WarsawPoland

T: +48-22-635-93-95


Main contact: Wanda Nowicka



Geographic areas of operation: Central and Eastern Europe.

Key activities: Regional network of NGOs and individuals. Works for the advancement of sexual and reproductive health and rights as fundamental human rights (SRHR), and advocates for their observance, prioritisation and implementation, both nationally and internationally.

Key campaigns: Campaigns to implement the European Commission’s ‘Strategy for Equality Between Women and Men, 2010-2015’.

Objectives for 2012 onwards: “We collaborate with the European Commission, European Parliament and the Council of the European Union to ensure that sexual and reproductive health (including HIV/AIDS) is considered a priority in the EU.”



Countries of member groups: Albania, Bulgaria (4), Croatia (3), Latvia, Lithuania, Macedonia, Poland, Romania (4), Slovakia.

Revenue

Main sources of funding: 2010-2013: Sigrid Rausing Trust (£135,000/approximately €155,000).

ASTRA Network(Central and East European Women’s Network for Sexual and Reproductive Health and Rights)http://www.astra.org.pl

Reproductive and Sexual Health


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15

Rue Montoyer 391000 BrusselsBelgium

T: +32-(0)2-675-75-05

F: +32-(0)2-675-72-70


Main contact: Evelyne Friedl


Name of representative in Brussels: Evelyne Friedl





Key activities: Organisation representing people with autism-spectrum disorder at European level. Aims to advance the rights of people with autism (and their families), and to help them improve their quality of life. Raises public awareness, and seeks to infl uence European decision-makers on all issues relating to autism.

Key campaigns: Celebrates ‘World Autism Awareness Day (WAAD)’ (every April). Partner in ‘Communication Shutdown’.

Objectives for 2012 onwards: “Autism-Europe considers that everyone should have access to up-to-date, evidence-based information on autism. Therefore we offer free videos of presentations made at the 2010 International Congress of Autism-Europe.”



Countries of member groups: Belgium (2), Bulgaria, Croatia (2), Cyprus, Czech Republic (2), Estonia, Finland, France (11), Germany, Greece (2), Hungary (3), Iceland, Ireland, Italy (6), Luxembourg (2), Macedonia, Malta, Netherlands, Norway, Poland (3), Portugal (2), Romania (2), Serbia, Slovakia, Slovenia, Spain (11), Sweden, Switzerland (2), Turkey, UK (10).

Groups to which organisation is affi liated: European Coalition for Community Living (ECCL); European Disability Forum (EDF); Platform of European Social NGOs (Social Platform).

Revenue


Main sources of funding: 2010, according to the Register of the European Transparency Initiative (ETI): European Commission (€130,000); membership contributions (€59,000). The EC funding sources include two Directorate-Generals: Employment, Social Affairs and Equal Opportunities (specifi cally, the European Community Programme for Employment and Social Solidarity PROGRESS, 2007-2013), and Justice, Fundamental Rights and Citizenship (specifi cally the ‘For Diversity, Against Discrimination’ initiative).

Autism-Europe(A-E)http://www.autismeurope.org

Learning Disability


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16

Rue d’Arlon, 80 Bte 11040 BrusselsBelgium

T: +32-2-743-15-90

F: +32-2-740-28-02


Main contact: Monique Goyens

Position of main contact: Director General

Name of representative in Brussels: Monique Goyens

Position of representative in Brussels: Director General

Contact for representative in Brussels: directorsoffi [email protected]



Key activities: Federation of independent national consumer organisations in Europe. Seeks to infl uence the development of policy, and to promote and defend the interests of European consumers. Health-oriented areas of activity include cross-border healthcare, e-health, food information, food hygiene and safety, marketing food to children, patient safety, and pharmaceuticals.


Number of member groups: 42 independent national consumer organisations from 31 European countries.

Countries of member groups: Austria (2), Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland (2), France (3), Germany (2), Greece (3), Hungary, Iceland, Ireland, Italy (2), Latvia, Luxembourg, Macedonia, Malta, Netherlands, Norway, Portugal, Poland (2), Romania, Slovakia, Slovenia, Spain (2), Sweden, Switzerland, UK (2).

Groups to which organisation is affi liated: Consumers International (CI).

Current affi liations with the EU: A seat in more than 80 EU working groups, including membership of the European Food Safety Authority (EFSA) Stakeholder Consultative Platform. Member of the DG SANCO EU Health Policy Forum (EUHPF). Involved in the activities of the European Medicines Agency (EMA). Member of the EUnetHTA Joint Action (JA) Stakeholder Forum.

Revenue

Most recent yearly revenue: €3.85m (2010), according to the Register of the European Transparency Initiative (ETI).

Pharmaceutical funding: None. BEUC states that it does not receive funding from companies.

Main sources of funding: 2010, according to the Register of the European Transparency Initiative (ETI): European Commission (€2.28m); membership contributions (€1.56m).

BEUC—the European Consumers’ Organisationhttp://www.beuc.eu



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28 Avenue du Parc de Procé44100 NantesFrance

T: +33-240-73-27-42


Main contact: Gérard Gueneau




Key activities: Common European platform dedicated to raising awareness of brain injury by co-ordinating co-operation between national associations of people with brain injury and their families. Promotes the interests of people with a brain injury, and works to improve the assistance that can be given to them and their families. Advocates to have re-evaluated the number of people in Europe who have a brain injury.

Key campaigns: BIF-EC national associations organise ‘European Trauma Cultural Days (ETCD)’, a biannual event bringing together patients suffering from brain injuries and their families.

Objectives for 2012 onwards: “We aim to actively participate within the European Disability Forum (EDF) to promote equality of chances and non-discrimination for people with a disability.”

Current EU-funded projects: Partner in ‘Transfer of Good Practices and Knowledge in Social Inclusion of People with Acquired Brain Injury’, 2009-2011, funded by the Human Resources and Employment Operational Programme of the European Social Fund.


Number of member groups: 18 national associations from 18 European countries.

Countries of member groups: Austria, Belgium, Czech Republic, Denmark, Finland, France, Germany, Iceland, Ireland, Italy, Netherlands, Poland, Portugal, Slovenia, Spain, Sweden, Switzerland, UK.

Groups to which organisation is affi liated: European Disability Forum (EDF).

Revenue

Main sources of funding: Membership subscriptions; project funding by the European Social Fund.

Brain Injured and Families-European Confederation(BIF-EC) http://www.bif-ec.eu

Brain Injury


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c/o Paule FunkenBERL 6/374European Commission1040 BrusselsBelgium

T: +32-2-29-80-741


Main contact: Roy Edwards


Name of representative in Brussels: Roy Edwards





Key activities: Self-help group for colleagues of the European institutions. Composed of European Commission staff and former staff and their families who have experienced cancer at fi rst hand, either as cancer patients, or as relatives of cancer patients. Provides extra voluntary information and support for colleagues and their families facing cancer.

Key campaigns: Runs ‘CSG Cancer Awareness Day’ (every October).

Objectives for 2012 onwards: “The CSG will build upon the theme of the 2011 CSG Action Day, ‘Cancer and the Family’.”


Number of member groups: No member groups, but numerous individual members.

Countries of member groups: Individual members drawn from most of the EU Member States.

Current affi liations with the EU: Relations with DG Human Resources and Security.

Revenue



Main sources of funding: European Commission; donations; merchandise sales.

Cancer Support Group ASBL(CSG)http://www.cancer-support.eu

Cancer


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c/o Suomen CP-liitto ryMalmin kauppatie 2600700 HelsinkiFinland

T: +358-400-421-652


Main contact: Johannes Verheijden

Position of main contact: Vice Chairman, ICPS


Geographic areas of operation: Europe (and international).

Key activities: An international self-help group (the International Cerebral Palsy Society, ICPS) with a notable European element. Promotes the rights and welfare of people with cerebral palsy (CP) and relevant disorders, provides a network for people with CP, parents and professionals to exchange and share the expertise, and encourages new developments in CP-related subject areas.

Objectives for 2012 onwards: “CP-ECA will continue to work in the fi eld of disability policy in Europe.”

Current EU-funded projects: Some member groups are involved in EC-funded projects, such as Cerebral Palsy Greece, which is running ‘Development of Supportive Packages for Parents and Teachers of Children with Cerebral Palsy (CP-PACK)’, 2010-2012, funded by the Lifelong Learning Programme Grundtvig of the Education, Audiovisual and Culture Executive Agency (EACEA).


Number of member groups: 13 member groups from 13 European countries (plus members in non-European countries).

Countries of member groups: Belgium, Denmark, Finland, Germany, Greece, Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, Turkey, UK.


Cerebral Palsy-European Communities Association(CP-ECA) http://www.icps.org.uk/



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Am Rothenanger 1b85521 RiemerlingGermany

T: +49-89-6283-6807

F: +49-89-6283-6808


Main contact: Jan Geissler (DE), Jana Pelouchová (CZ), Giora Sharf (IL)

Position of main contact: Co-Founders and Coordinators


Geographic areas of operation: Worldwide (founded in Europe).

Key activities: Virtual network and an Internet platform for leukaemia (mainly chronic myeloid leukaemia, CML) patient organisations. Acts as a Web-based collaboration nexus for CML patient advocates to share best practice on cancer patient advocacy.

Key campaigns: ‘Baveno CML Declaration’, in which signatories call for a non-invasive cure for CML.

Objectives for 2012 onwards: “CML Advocates Network relaunched its web community in 2011, and now links into preferred social media channels, offers blog-like comment functionality, and gives advocates and patients new ways to interact with the Network.”



Countries of member groups: Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France (3), Germany (2), Hungary, Ireland, Italy, Kosovo, Latvia, Lithuania, Macedonia, Netherlands, Poland, Portugal (2), Romania, Serbia, Slovenia, Spain, Sweden, Switzerland, UK (3).

Groups to which organisation is affi liated: None.

Revenue

Most recent yearly revenue: €300.


Main sources of funding: Member patient groups.

CML Advocates Networkhttp://www.cmladvocates.net

Cancer


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c/o Deutsche Zöliakie-Gesellschaft e.V.Filderhauptstraße 6170599 StuttgartGermany

T: +49-(0)711-45-99-81-0


Main contact: Hanna Koponen

Position of main contact: General Coordinator (2010-2012), Youth Committee



Key activities: Umbrella organisation of European coeliac youth groups within the Association of European Coeliac Societies (AOECS). Creates programmes and initiatives, such as international summer camps, a network for travelling, and Travel Net, which supplies information on gluten-free food throughout Europe.

Key campaigns: ‘A Gluten-Free Hamburger, Please!’, a 2011 web petition aimed at creating cooperation with fast-food companies around Europe.

Objectives for 2012 onwards: “CYE will work towards improving life conditions for young people with coeliac disease.”


Number of member groups: 4 youth societies from 4 European countries, plus links with relevant societies from another 7 European countries.

Countries of member groups: Bosnia, Finland, France, Germany, Italy, Netherlands, Norway, Serbia, Spain, Sweden, UK.

Groups to which organisation is affi liated: Association of European Coeliac Societies (AOECS).

Revenue


Main sources of funding: Association of European Coeliac Societies (AOECS); various youth and European funding programmes, such as the Council of Europe’s European Youth Foundation (EYF).

Coeliac Youth of Europe(CYE)http://www.cyeweb.eu

Auto-Immune and Immune Diseases / Young People


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22

Rue de Londres 171050 BrusselsBelgium

T: +32-2-511-41-79

F: +32-2-514-47-73


Main contact: William Lay


Name of representative in Brussels: William Lay

Position of representative in Brussels: Director




Key activities: International voluntary organisation that promotes family policy, solidarity between generations, and the interests of children within the EU. Links general and single-issue national family organisations. Health is a major subject area.

Key campaigns: Involvement in ‘European Year of Volunteering 2011’.

Objectives for 2012 onwards: “COFACE plans to concentration on the 2011 European Year on Volunteering, develop relations with the European Parliament, build systematic contacts with EU Presidencies, and step towards the ‘2014 European Year of Families’.”

Current EU-funded projects: Partner in two projects: ‘Self-Assessment of Family Carers’ Needs’, 2010-2012, funded by the Lifelong Learning Programme of the Education, Audiovisual and Culture Executive Agency (EACEA); and ‘FLABEL (Food Labelling to Advance Better Education for Life)’, 2008-2011, funded by the 7th Framework Programme.


Number of member groups: 51 member organisations from 19 EU Member States.

Countries of member groups: Austria, Belgium (7), Bulgaria (2), Cyprus, Czech Republic, Finland, France (13), Germany, Greece (3), Hungary, Ireland, Italy (4), Latvia, Lithuania, Poland, Portugal (3), Romania, Slovakia (2), Spain (6).

Groups to which organisation is affi liated: European Brain Injury Society (EBIS); European Disability Forum (EDF); European Housing Forum (EHF); Platform of European Social NGOs (Social Platform).

Revenue


Main sources of funding: 2010, according to the Register of the European Transparency Initiative (ETI): European Commission (€720,000); membership contributions (€68,000). EC funding sources include DG Employment, Social Affairs and Equal Opportunities (specifi cally, the European Community Programme for Employment and Social Solidarity PROGRESS, 2007-2013), and DG Education and Culture.

Confederation of Family Organisations in the European Union(COFACE) http://www.coface-eu.org

Families and Health


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PO Box 855West PerthWestern Australia 6872

T: +61-8-9489-7791

F: +61-8-9489-7705


Main contact: Linda Gibbs

Position of main contact: Offi ce Manager


Geographic areas of operation: Worldwide. Europe is the largest region within the organisation.

Key activities: Brings together patient groups and child health organisations from around the world that are working towards the elimination of meningitis and its related septicaemia. Assists members to be sustainable, infl uential sources of information and support.

Key campaigns: Contributes to ‘World Meningitis Day’ (every April).



Countries of member groups: Czech Republic, France, Germany, Ireland, Italy, Netherlands, Poland, Spain, Sweden, UK (3).

Revenue

Most recent yearly revenue: Under $530,000/approximately €373,000 (2010), according to GSK.

Pharmaceutical funding: 2011: GSK; Novartis; Pfi zer Australia. GSK notes that its 2010 donation of $80,000/approximately €56,000 represented less than 15% of the organisation’s revenue that year.

Main sources of funding: Pharmaceutical companies.

Confederation of Meningitis Organisations Inc(CoMO)http://www.comoonline.org

Infectious


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24

In den Dauen 653117 BonnGermany

T: +49-228-98-780-31

F: +49-228-98-780-77


Main contact: Karleen De Rijcke



Geographic areas of operation: Europe (and worldwide).

Key activities: Federation of national European cystic fi brosis (CF) associations, and a subdivision of Cystic Fibrosis Worldwide. Promotes appropriate medical care for CF patients in Europe, represents and defends their interests, and raises public awareness and understanding of the concerns of CF patients and their families.

Key campaigns: Organises European ‘Cystic Fibrosis Awareness Week’ (every November).

Objectives for 2012 onwards: “Access to better CF care can only be ensured by building strong local associations and networks. Therefore, CF Europe organises network and capacity-building meetings across Europe.”



Countries of member groups: Austria, Belgium, Bulgaria (2), Czech Republic, Denmark, Estonia, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Netherlands (2), Norway, Poland (2), Romania, Serbia, Slovakia, Spain, Sweden, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: Cystic Fibrosis Worldwide (CFW); European Organisation for Rare Diseases (EURORDIS).

Revenue

Pharmaceutical funding: Abbott sponsors the CF Europe and CF Worldwide website.

Main sources of funding: Donations by national CF associations. Looks for funding through sponsorship, donations and subsidies.

Cystic Fibrosis Europe(CF Europe; CFE)http://www.cfww.org/cfe



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Usa-Straße 161231 Bad NauheimGermany

T: +49-(0)700-4884-0700 / +49-(0)-171-4700-919

F: +49-6032-9492-885


Main contact: Markus Wartenberg



Geographic areas of operation: German-speaking countries of Europe (close cooperation with equivalent groups elsewhere).

Key activities: Self-help community of patients, families and medical professionals. Specialises in gastrointestinal stromal tumors (GIST), kidney cancer, and sarcomas. Provides patient information, support and advocacy, encourages research and clinical trials, and increases public awareness of rare cancers.

Objectives for 2012 onwards: “Helping people to help themselves will continue to be the motivating force behind Das Lebenshaus.”


Number of member groups: 1,200 individual members.

Countries of member groups: Austria, Germany, Switzerland (and other European countries).

Groups to which organisation is affi liated: European Cancer Patient Coalition (ECPC); Global GIST Network; Sarcoma Patients EuroNet Association.

Revenue

Main sources of funding: Pharmaceutical companies; membership fees.

Das Lebenshaus e.V.http://www.daslebenshaus.org

Cancer


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Am Heumarkt 27/31030 WeinAustria

T: +43-1-876-40-30-0

F: +43-1-876-40-30-30


Main contact: Rainer Riedl

Position of main contact: Treasurer


Geographic areas of operation: International.

Key activities: Umbrella organisation for national associations representing people with epidermolysis bullosa (EB). Seeks to ensure that advances in EB research translate into treatments through the development of strategic partnerships with funders and industry. Publishes best-practice guidelines on EB clinical care, and aids in the formation of new EB patient support groups.

Key campaigns: Supports ‘Rare Disease Day’ (every February). Helps to organise ‘International Epidermolysis Bullosa Awareness Week’ (every October).

Current EU-funded projects: Partner in ‘GENEGRAFT’, 2011-2016, funded by the 7th Framework Programme.



Countries of member groups: Austria, Belgium, Bosnia, Bulgaria, Croatia, Czech Republic, Finland, France, Germany, Hungary, Ireland, Italy, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK.

Groups to which organisation is affi liated: European Disability Forum (EDF); European Patients’ Forum (EPF); Patients Network for Medical Research and Health (EGAN).

Current affi liations with the EU: Involved in the activities of the European Medicines Agency (EMA).

Revenue

Most recent yearly revenue: €37,000 (plus gifts in kind).


Main sources of funding: Membership subscriptions; limited corporate donations.

DEBRA Internationalhttp://www.debra-international.org



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Via dei Bizanti, 9788046 Lamezia TermeCatanzaro, CalabriaItaly

T: +39-096-8463-499

F: +39-081-8140-692


Main contact: Jean-Luc Simon




Key activities: European network of national organisations or assemblies of people with a disability, established to promote human rights of disabled people. Advocates on behalf of the economic and social integration of people with a disability, and empowers and supports organisations of disabled people and their members.



Countries of member groups: Albania, Belgium, Bulgaria, Croatia, Czech Republic, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Macedonia, Malta, Norway, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: Disabled Peoples International (DPI); European Disability Forum (EDF).

Revenue


Main sources of funding: 2009-2010, according to the Register of the European Transparency Initiative (ETI): public fi nancing (€261,000); membership fees (€8,000).

Disabled Peoples’ International-Europe(DPI-Europe)http://www.dpi-europe.org

Disability


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28

Svitrigailos St. 11BVilnius 03228Lithuania

T: +370-5-2691-600

F: +370-5-2691-601


Main contact: Asta Minkeviciene



Geographic areas of operation: Central and eastern Europe (and Asia).

Key activities: Network of organisations that support, develop and advocate for harm-reduction approaches in the fi elds of drugs, HIV, public health and social exclusion. Promotes humane, evidence-based harm-reduction approaches to drug use, with the aim of improving health and protecting human rights at individual, community, and societal level.

Objectives for 2012 onwards: “During 2010-2014, EHRN seeks to help implement non-discriminating policies for drug users and other vulnerable people, and to improve and expand the use of evidence-based interventions and services for them.”

Current EU-funded projects: Partner in three projects: ‘Access to Opioid Medication in Europe (ATOME)’, 2009-2014, funded by the 7th Framework Programme; ‘Strengthening Civil Society to Promote the Reduction of Drug-Related Harms (EuroHRN)’, 2010-2011, funded by the DG Justice Drug Prevention and Information Programme; and ‘Identifi cation of Evidence-Based HCV Prevention in Europe for Young Drug Users at Risk’, 2010-2012, also funded by DG Justice.


Number of member groups: Approximately 93 member organisations from 22 European countries (many other individual members).

Countries of member groups: Albania (4), Bosnia (4), Bulgaria (6), Croatia (2), Czech Republic (3), Denmark, Estonia (3), Finland, France (2), Hungary (7), Kosovo (2), Latvia (8), Lithuania (6), Macedonia (14), Netherlands (2), Poland (6), Romania (7), Serbia (4), Slovakia, Slovenia (3), Switzerland, UK (6).

Groups to which organisation is affi liated: International Drug Policy Consortium (IDPC).

Current affi liations with the EU: Member of the DG SANCO HIV/AIDS Civil Society Forum (CSF).

Revenue

Most recent yearly revenue: Approximately €900,000 (2009).

Pharmaceutical funding: Hoffmann-La Roche; Schering Plough.

Main sources of funding: 2009: International Council of AIDS Service Organizations (ICASO); Open Society Institute; European Commission (€150,000, or 8% of 2009 income). Funding from the private sector and government is minor.

Eurasian Harm Reduction Network(EHRN)http://www.harm-reduction.org

HIV/AIDS / Public Health


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c/o Ataxia UK9 Winchester HouseKennington ParkCranmer RoadLondon, SW9 6EJUK

T: +44-(0)207-582-1444


Main contact: Marco Meinders

Position of main contact: Treasurer



Key activities: Non-profi t organisation formed by national ataxia groups in Europe. Member organisations work together to give people with hereditary ataxia as normal a life as possible. Represents people with hereditary ataxias, encourages research into causes and treatments, and campaigns for treatments to be made available.

Objectives for 2012 onwards: “Another six national ataxia groups in Europe are potential members of euro-Ataxia.”



Countries of member groups: Denmark, Finland, France (2), Germany, Ireland, Italy, Netherlands (2), Spain, Sweden, Switzerland (2), UK.

Groups to which organisation is affi liated: European Disability Forum (EDF); European Federation of Neurological Associations (EFNA); European Organisation for Rare Diseases (EURORDIS); Patients Network for Medical Research and Health (EGAN).

Revenue

Main sources of funding: Member organisations; voluntary subscriptions.

euro-Ataxia(European Federation of Hereditary Ataxias)http://www.euro-ataxia.eu



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30

96 Rue des Confédérés1000 BrusselsBelgium

T: +32-(0)2-736-05-72


Main contact: Mariann Skar


Name of representative in Brussels: Mariann Skar





Key activities: Alliance of non-governmental and public-health organisations advocating the prevention and reduction of alcohol-related harm in Europe through effective and evidence-based alcohol policy. Areas of specialisation include alcohol and pregnancy, and road safety.

Key campaigns: Supports ‘World Cancer Day’ (every February).

Current EU-funded projects: Partner in ‘Transatlantic Civil Society Dialogues EU-US’, 2010-2012, funded by the former DG External Relations.


Number of member groups: 43 organisations from 21 European countries.

Countries of member groups: Belgium, Bulgaria, Czech Republic, Denmark (3), Estonia, Finland (3), France, Germany (2), Greece, Ireland (3), Italy (4), Lithuania (2), Netherlands (2), Norway, Poland (2), Portugal (3), Slovenia, Spain (5), Sweden (3), Switzerland, UK (2).

Groups to which organisation is affi liated: European Public Health Alliance (EPHA); Global Alcohol Policy Alliance (GAPA).

Current affi liations with the EU: Member of the DG SANCO European Alcohol and Health Forum (EAHF). Participates in the DG SANCO Health Policy Forum (EUHPF).

Revenue


Main sources of funding: Member organisations’ contributions (staff time or fi nancial), especially Actis of Norway, and the International Organisation of Good Templars (IOGT-NTO) of Sweden. Some project funding from the European Commission.

Eurocare(European Alcohol Policy Alliance)http://www.eurocare.org

Addiction


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23 Ranelagh RoadDublin 6Ireland

T: +353-86-129-4296


Main contact: Frank Goodwin

Position of main contact: Secretary



Key activities: Brings together organisations representing carers. Promotes recognition of carers and carers’ interests, the social inclusion of carers, and the development of services to support carers. Collaborates with other appropriate interest and advocacy groups at national and EU levels.

Key campaigns: Supports ‘Citizens’ Initiative’ (one million or more citizens can request EU legislation), ‘European Year of Volunteering 2011’, and ‘European Year of Active Ageing 2012’.

Objectives for 2012 onwards: “The role of carers is more crucial than ever, due to demographic changes and challenges to formal health- and social-care services throughout Europe.”


Number of member groups: 50 carers’ organisations and relevant organisations from 22 European countries.

Countries of member groups: Belgium (5), Bulgaria (3), Czech Republic, Denmark (2), Estonia, Finland (2), France (2), Germany (2), Greece, Hungary, Ireland (4), Italy (3), Latvia, Lithuania, Malta, Netherlands (3), Romania, Slovakia (3); Slovenia, Spain (2), Sweden (2), UK (8).

Current affi liations with the EU: Provides the secretariat to the European Parliament Interest Group on Carers.

Revenue

Main sources of funding: Commercial sponsorship (Tena sponsors website; S.C.A. Hygiene Products AB sponsors a project).

Eurocarers(European Association Working for Carers)http://www.eurocarers.org

Carers


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Avenue des Arts 1-21210 BrusselsBelgium

T: +32-(0)2-511-70-83

F: +32-(0)2-511-72-98


Main contact: Jana Hainsworth


Name of representative in Brussels: Jana Hainsworth





Key activities: Promotes the welfare and rights of children and young people in Europe through the building of a network of organisations and individuals working to improve the quality of life of children and young people.

Key campaigns: Member of the ‘European Year of Volunteering 2011’ Alliance. Part of an NGO coalition lobbying for the ‘2012 European Year for Active Ageing and Intergenerational Solidarity’.

Objectives for 2012 onwards: “Eurochild is committed to the vision of a society for all, shared by members of the NGO Coalition for a ‘2012 European Year for Active Ageing and Intergenerational Solidarity’. We want a society in which people feel empowered, so that they have control over their own well-being.”

Current EU-funded projects: Partner in ‘Speak up!’, 2010-2012, funded by the DG Justice 2007-2013 Fundamental Rights and Citizenship Programme.



Countries of member groups: Albania (3), Austria (2), Belgium (7), Bulgaria (5), Croatia (4), Cyprus (2), Czech Republic (2), Denmark (4), Estonia (2), Finland (6), France (7), Germany (5), Greece (7), Hungary (4), Iceland, Ireland (7), Italy (5), Latvia, Lithuania (2), Luxembourg, Macedonia, Malta (2), Netherlands (4), Poland (3), Portugal (2), Romania (3), Serbia (2), Slovakia, Slovenia (3), Spain (3), Sweden (6), UK (23).

Groups to which organisation is affi liated: European Anti-Poverty Network (EAPN); Platform of European Social NGOs (Social Platform).

Revenue


Main sources of funding: 2009: DG Employment, Social Affairs and Equal Opportunities, and DG Justice and Home Affairs (€553,000); membership fees (€109,000).

Eurochildhttp://www.eurochild.org

Children


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c/o Quest for Quality BVVijzelstraat 771017 HG AmsterdamNetherlands

T: +31-20-3303-449

F: +31-20-3303-450


Main contact: Ernst Buning




Key activities: Forum for Europeans active in the fi eld of substitution treatment for heroin addiction—practitioners, researchers, and policy-makers, as well as heroin users (and their families/friends). Aims to improve the quality of pharmacotherapy in addiction treatment, and its accessibility. Provides information through publications and a website, offers training, and conducts advocacy.


Number of member groups: An informal network.

Euro-Methworkhttp://www.q4q.nl/euromethwork

Mental Health


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Rue Royale 1461000 BrusselsBelgium

T: +32-2-250-09-62

F: +32-2-250-09-69


Main contact: Mirja Leibnitz


Name of representative in Brussels: Mirja Leibnitz

Position of representative in Brussels: Coordinator



Geographic areas of operation: Europe and international.

Key activities: Membership-based platform for organisations that cooperate in the fi eld of sexual and reproductive health and rights (SRHR). Acts as a facilitator for member NGOs to exchange information and experiences in their areas of concern. Members aim to ensure that the EU implements SRHR policies.

Key campaigns: Supports the ‘7 Billion Actions’ campaign.

Objectives for 2012 onwards: “By 2012, EuroNGOs will be a strong platform of an increased number of members from the newest EU Member States, cooperating to ensure that SRHR are in EU policies and funding streams.”



Countries of member groups: Austria (2), Belgium (2), Bulgaria, Cyprus, Denmark, Finland, France (2), Germany, Hungary, Ireland, Italy, Latvia, Lithuania, Netherlands, Norway, Poland, Portugal, Romania, Spain (2), Sweden, Switzerland (2), UK (3).

Revenue


Main sources of funding: 2010: Hewlett Foundation (€170,000); MacArthur Foundation (€150,000); Packard Foundation (€184,000); membership fees (€16,000).

EuroNGOs(European NGOs for Sexual and Reproductive Health and Rights, Population and Development)http://www.eurongos.org



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Piazza Amendola, 3Milan 20149Italy

T: +39-02-3659-2280

F: +39-02-3659-2284


Main contact: Susan Knox



Geographic areas of operation: Europe (as defi ned by the WHO).

Key activities: Independent, non-profi t organisation of affi liated groups from countries throughout Europe. Works to raise awareness of breast cancer, and to mobilise the support of European women in pressing for improved breast cancer education, appropriate screening, optimal treatment and care, and increased funding for research.

Key campaigns: Runs ‘Breast Health Day’ (every October), using Facebook, Twitter, and YouTube.

Objectives for 2012 onwards: “Latest ED priorities include implementation of the European Parliament Breast Cancer Resolution, and the ‘European Guidelines for quality assurance in breast cancer screening and diagnosis’ (4th edition), plus accreditation guidelines for breast units and National Breast Cancer registries.”


Number of member groups: 36 member groups from 36 European countries (plus groups from Asian countries).

Countries of member groups: Albania, Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Malta, Monaco, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: European CanCer Organisation (ECCO); European Patients’ Forum (EPF).

Revenue


Pharmaceutical funding: Amgen Europe GmBH; Amgen Inc; Eli Lilly Company; F. Hoffmann-La Roche Ltd; GSK; Merck-Serono; Novartis; Pfi zer. GSK points out that its 2010 donation of €50,000 represented 10% of the organisation’s revenue that year.

Main sources of funding: 2010: European Commission (€57,000); membership dues (€16,000); reimbursements; Vereniging Zonder Winstoogmerk-Breast Cancer Working Group (VZW-BCWG); foundations/non-profi ts.

EUROPA DONNA—the European Breast Cancer Coalition(ED) http://www.europadonna.org

Cancer


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c/o European School of Oncology (ESO)Via del Bollo 420123 MilanoItaly

T: +32-3-338-91-50

F: +32-3-338-91-52


Main contact: Professor Louis Denis


Name of representative in Brussels: Erik Briers

Position of representative in Brussels: Voting Member, Europa Uomo Belgium




Key activities: European advocacy movement for the fi ght against prostate cancer, and a European coalition of patients supporting groups for prostate diseases (in general) and prostate cancer (in particular).

Objectives for 2012 onwards: “EUomo will be building capacity in central and Eastern Europe, with a regional offi ce in Warsaw under development. EUomo will continue to support the activities of national members, will be active in information/education partnerships, and will pursue the development of centres of excellence.”

Current EU-funded projects: Partner in ‘Prostate Research Organisations Network of Early-Stage Training (PRO-NEST)’, 2009-2013, funded by the 7th Framework Programme.


Number of member groups: 24 Member organisations from 23 European countries.

Countries of member groups: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, Lithuania, Netherlands (2), Norway, Poland, Portugal, Romania, Slovakia, Spain, Sweden, Switzerland, UK.

Groups to which organisation is affi liated: European Association of Urology (EAU); European CanCer Organisation (ECCO); European Cancer Patient Coalition (ECPC); European Cancer Prevention Organisation (ECP); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); European School of Oncology (ESO); European School of Urology (ESU); European Society for Medical Oncology (ESMO); European Society of Oncology Pharmacy (ESOP); European Society for Therapeutic Radiology and Oncology (ESTRO); Organisation of European Cancer Institutes (OECI); WorldWide Prostate Cancer Coalition (WWPCC).

Current affi liations with the EU: Participates in the DG SANCO European Partnership for Action Against Cancer (EPAAC). Involved in the activities of the European Medicines Agency (EMA).

Revenue


Pharmaceutical funding: Amgen; Ferring; GSK; Novartis; Roche; Sanofi -Aventis. All provide project support. GSK notes that it gave €25,000 in 2010 (20% of EUomo’s annual revenue), and €3,400 for EUomo’s Proactive Prostate Coalition Taskforce.

Main sources of funding: European Association for Urology (EAU); pharmaceutical companies.

Europa Uomo—the European Prostate Coalition(EUomo)http://www.europa-uomo.org

Cancer


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3 Kericuff22260 PloezelFrance

T: Julia Kennedy: +44-(0)77-6608-4256


Main contact: Jola Gore-Booth

Position of main contact: Founder/CEO



Key activities: European organisation dedicated to colorectal cancer (CRC). Aims to unite patients, carers, healthcare professionals, politicians, the media and the public in the fi ght against the disease. Raises the profi le of colorectal cancer, forms patient advocacy groups throughout Europe to create a colorectal cancer community. Encourages improvements in European standards and in equity of care.

Key campaigns: ‘Manifesto for Life—Calls for Action’, colorectal cancer as a key priority for all EU citizens.

Objectives for 2012 onwards: “Europacolon will expand its network across Europe, make a success of the fi rst and second European Colorectal Cancer Patient Conferences (Spain, 2011, and the Czech Republic, 2012), raise the europacolon profi le in Brussels, and continuing screening workshops in Europe.”


Number of member groups: 10 affi liate members, 8 associate members, and 43 pending affi liate members from 21 European countries.

Countries of member groups: Austria, Belgium, Bosnia, Croatia, Cyprus, Czech Republic, France, Finland, Greece, Hungary, Italy, Lithuania, Macedonia, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, UK.

Groups to which organisation is affi liated: European CanCer Organisation (ECCO); European Cancer Patient Coalition (ECPC); European School of Oncology (ESO); European Society of Digestive Oncology (ESDO); European Society of Medical Oncology (ESMO); LIVESTRONG; United European Gastroenterology Federation (UEGF).

Current affi liations with the EU: Collaborating partner in the DG SANCO European Partnership for Action Against Cancer (EPAAC).

Revenue

Most recent yearly revenue: €120,000.

Pharmaceutical funding: Abbott Molecular; Bayer Healthcare; Hoffmann-La Roche; Merck-Serono.

Main sources of funding: Pharmaceutical companies; diagnostic companies; other companies. Application submitted for part funding of the 2nd European Colorectal Cancer Patient Conference, 2012.

europacolon(EC)http://www.europacolon.com

Cancer


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Rue des Confédérés 96-981000 BrusselsBelgium

T: +47-23-21-45-00

F: +47-23-21-45-01


Main contact: Anders Ulstein


Name of representative in Brussels: Anders Ulstein





Key activities: Volunteer non-profi t drug information network and advocacy organisation that advocates a prevention-and-recovery-oriented drug policy at national and international level. Provides policy-makers, the media, and the public with information on drug problems, prevention, treatment and aftercare. Co-operates with like-minded organisations in the prevention of drug abuse.

Objectives for 2012 onwards: “EURAD thinks that prevention and long-term follow-up towards recovery and rehabilitation needs greater emphasis in today’s drug policy agenda, and will concentrate on advocacy to ensure that this becomes the case.”


Number of member groups: Networks with dozens of affi liated organisations from 11 European countries.

Countries of member groups: Belgium, Finland, France, Italy, Lithuania, Netherlands, Norway, Romania, Sweden, Switzerland, UK.

Groups to which organisation is affi liated: Conference of Non-Governmental Organisations in Consultative Relationship with the United Nations (CoNGO).

Revenue

Main sources of funding: Donations; membership fees.

Europe Against Drugs(EURAD)http://www.eurad.net

Addiction / Mental Health


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39

Place Raymond Blyckaerts, 131050 BrusselsBelgium

T: +32-2-626-96-40

F: +32-2-644-33-07


Main contact: Koen Block


Name of representative in Brussels: Koen Block

Position of representative in Brussels: Executive Director

Contact for representative in Brussels: offi [email protected]



Key activities: Community organisation that promotes the interests of people living with HIV/AIDS. Aims for the fastest-possible patient access to state-of-the-art medical products, devices and diagnostic tests that prevent or treat HIV infection, and works to improve the quality of life of people living with HIV/AIDS in Europe.

Objectives for 2012 onwards: “EATG has 3 main pillars: science, training and policy. Access to HIV treatment, care and prevention will remain a focus, but co-infections have gained importance during the previous years.”

Current EU-funded projects: Partner in two projects: ‘Combined Highly-Active Anti-Retroviral Microbicides (CHAARM)’, 2010-2014, funded by the 7th Framework Programme; and ‘EUROPRISE’, 2007-2012, funded by the 6th Framework Programme.


Number of member groups: Partner individuals and organisations throughout Europe.

Groups to which organisation is affi liated: European Platform for Patients’ Organisations, Science and Industry (EPPOSI); European Public Health Alliance (EPHA); World Association of NGOs (WANGO).

Current affi liations with the EU: Co-chairs the DG SANCO HIV/AIDS Civil Society Forum (CSF). Member of the DG SANCO EU Health Policy Forum (EUHPF), and the DG SANCO HIV/AIDS Think Tank. Involved in the activities of the European Medicines Agency (EMA).

Revenue


Pharmaceutical funding: 2010: Abbott (€144,000); Avexa (€14,000); Boehringer-Ingelheim (€40,000); Bristol-Myers Squibb (€101,000); Gilead (€147,000); MSD (€118,000); Roche (€67,000); Tibotec (€78,000); ViiV (€150,000).

Main sources of funding: 2010: Pharmaceutical companies; European Commission (approximately €165,000 for projects); Levi Strauss Foundation (€27,000).

European AIDS Treatment Group(EATG)http://www.eatg.org

HIV/AIDS


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c/o Butler and Speller1436 London RoadLeigh-on-SeaEssexSS9 2ULUK


Main contact: Mike Isles




Key activities: Fights against counterfeit medicines, and promotes patient safety in Europe. Involved in the anti-counterfeiting activities of the European Commission, European Parliament and the WHO. Raises public awareness of the need to reduce consumer exposure to the risks of purchasing medicines online, and debates the patient safety aspect of the parallel trade.


Number of member groups: 14 non-funding partner organisations (many of them pan-European patient groups).

Revenue

Pharmaceutical funding: Bayer Healthcare; Boehringer Ingelheim; Eli Lilly & Company; Johnson & Johnson; MSD; Novartis; Nycomed; Pfi zer; Wyeth.

Main sources of funding: Aegate; Ahura Scientifi c; Idis.

European Alliance for Access to Safe Medicines(EAASM)http://www.eaasm.eu

Public Health


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c/o Dru_tvo distrofi kov SlovenijeLinhartova 11000 LjubljanaSlovenia

T: +386-1472-0500

F: +386-1432-8142


Main contact: Boris Sustarsic




Key activities: NGO whose member organisations work together to give people with neuro-muscular disorders (NMD) as normal a life as possible. Aims to build a strong organisation that represents people with NMD throughout Europe.



Countries of member groups: Austria, Belgium (2), Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Kosovo, Lithuania, Malta, Moldova, Netherlands, Norway, Poland, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden (2), Switzerland (2), Turkey, UK.

Groups to which organisation is affi liated: European Disability Forum (EDF); European Federation of Neurological Associations (EFNA); European Organisation for Rare Diseases (EURORDIS).

European Alliance of Neuro-Muscular Disorders Association(EAMDA) http://www.eamda.eu



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2 rue Mi-les-VignesBP 6102454521 Laxou CedexFrance

T: +33-(0)3-83-30-93-34

F: +33-(0)3-83-30-00-68


Main contact: Jean-Luc Corti

Position of main contact: Managing Director



Key activities: Association of parents and patients motivated to fi ght leukodystrophy. Provides a solidarity network for families, delivering information on leukodystrophy and therapeutic approaches. Supplies families with the services of a psychologist and medical advisor, and sponsors research through its own research foundation.

Key campaigns: The ‘Shoes On and Beat the Disease’ initiative has fundraised since 1994.


Number of member groups: 5 member organisations from 5 European countries. Over 1,000 individual members.

Countries of member groups: Belgium, Italy, Luxembourg, Spain, Switzerland.

Revenue


Main sources of funding: 2008: donations (€6m), especially from the French Ministries of Education, and Health, Youth, Sports and Associative Life; sales of merchandise.

European Association against Leukodystrophies(ELA)http://www.ela-asso.com



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c/o Association Pour l’Amelioration des Conditions d’Hospitalisation des Enfants (APACHE)BP 16292185 Antony CedexFrance

T: +33-(0)1-42-37-61-88


Main contact: Dr Sylvie Rosenberg Reiner

Position of main contact: Co-ordinator (until mid-2012)



Key activities: Umbrella organisation for member associations involved in the welfare of all children before, during, or after a hospital stay. Member associations aim to have the principles of the EACH Charter (setting out the rights of children in hospital) incorporated in health laws, regulations and guidelines in Europe.

Key campaigns: Implementing the goals of the ‘EACH Charter’ that are still not in place in Europe.

Objectives for 2012 onwards: “Member organisations should concentrate on ensuring the implementation of the EACH Charter throughout all areas where sick children and young people are cared for, both in hospital, and in the community.”



Countries of member groups: Austria, Belgium, Croatia, Czech Republic, Finland, France (2), Germany, Hungary, Iceland, Ireland, Italy, Netherlands, Portugal, Slovenia, Sweden, Switzerland, UK.

Groups to which organisation is affi liated: Eurochild.

Revenue

Most recent yearly revenue: 2009 surplus: €798.

Main sources of funding: Membership subscriptions.

European Association for Children in Hospital(EACH)http://www.each-for-sick-children.org

Children


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Rijswijkstraat 21059 GK AmsterdamNetherlands

T: +31-20-511-4513

F: +31-20-511-4510


Main contact: Wim Rogmans

Position of main contact: General Secretary



Key activities: Network representing organisations and individuals working to prevent injury and to promote safety. Policies and actions concentrate on child safety, consumer safety, safety for seniors, safety of vulnerable road users, safety in sports, and the prevention of violence and self harm. A platform, advocate, and resource.

Key campaigns: ‘Declaration on Injury Prevention and Safety Promotion in the European Union’. ‘Europe Summary Report Card’.

Objectives for 2012 onwards: “EuroSafe’s 2011-2013 work plan includes the following four goals: better injury-prevention policies; focused actions on injury priorities in Europe; sharing resources, data and intelligence; and the sustainability of EuroSafe’s leadership role.”


Number of member groups: NGO members from at least 8 European countries.

Countries of member groups: Austria, Belgium (4), Germany (2), Greece, Ireland, Netherlands, Norway, UK (4).

Groups to which organisation is affi liated: No affi liations, but three main partners: European Commission; UNICEF; World Health Organization (WHO).

Revenue


Main sources of funding: 2009: European Commission (€111,000); membership fees. 2011: Executive Agency for Health and Consumers (EAHC) (€85,000).

European Association for Injury Prevention and Safety Promotion(EuroSafe) http://www.eurosafe.eu.com

Public Health


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16 rue Emile Lavandier1924 Luxembourg

F: +352-44-22-25


Main contact: Sari Hirvonen-Skarbö




Key activities: Represents at European level the interests of deaf or hearing-impaired people who have regained hearing perceptions through a cochlear implant (CI). Raises awareness, disseminates information, promotes communication and information systems friendly to CI users, and encourages research and development in the medical and technical fi elds of CI.

Key campaigns: Supports ‘International Cochlear Implant Day’ (every February).


Number of member groups: 26 national associations from 21 European countries.

Countries of member groups: Austria (2), Belgium, Cyprus, Czech Republic, Denmark (2), Estonia, Finland (2), France, Germany, Greece, Hungary, Italy, Luxembourg, Netherlands, Norway, Portugal, Spain, Sweden (2), Switzerland, Turkey, UK (2).


Revenue

Main sources of funding: Medical device companies (Advanced Bionics; Cochlear; MED-EL; Neurelec).

European Association of Cochlear Implant Users(EURO-CIU)http://eurociu.implantecoclear.org

Disability


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Uerdinger Straße 43,40668 MeerbuschGermany

T: +49-(0)-21-50-70-59-670

F: +49-(0)-21-50-70-59-671


Main contact: No named contact person.



Key activities: Participates in the founding of new national organisations for people with sarcoidosis. Acts to stimulate international research, and provides a forum for the exchange of ideas, experiences and expertise. Prioritises the povision of adequate information for people with sarcoidosis.


Number of member groups: 6 national organisations from 6 European countries.

Countries of member groups: Belgium, Germany, Ireland, Netherlands, Switzerland, UK.


European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders(EPOS) http://www.sarcoidosis.biz

Auto-Immune and Immune Diseases


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Avenue d’Auderghem 631040 BrusselsBelgium

T: +32-2-282-46-10

F: +32-2-230-72-33


Main contact: Luk Zelderloo


Name of representative in Brussels: Luk Zelderloo





Key activities: Promotes service providers for people with a disability. Supplies members with information and services (including networking and exchange possibilities at European, national, regional and local levels). Main objective is to promote the equalisation of opportunities for people with a disability, through the provision of effective and high-quality service systems.

Objectives for 2012 onwards: “Our 2009-2013 strategy: implementation of the ‘UN Convention on the Rights of Persons with Disabilities’ (a core EASPD objective); improved organisational capacity and governance for members; voicing the expectations of members; ensuring dialogue with the EU; and working with key EU networks.”

Current EU-funded projects: Partner in the following seven projects, which are all funded by the DG Education and Culture Lifelong Learning Programme (Comenius and Leonardo da Vinci): ‘ImPaCT in Europe’, 2009-2012; ‘Pathways to Inclusion (P2I)’, 2009-2012; ‘Development of a Common Training Programme for ABI Caregivers’, 2009-2011; ‘National Qualifi cation Framework’, 2009-2011; ‘Creating a Common Foundation in Care’, 2009-2011; ‘IBB2’, 2010-2012; and ‘EGDMS’, 2011-2012. Also a partner in ‘INCLUSION’, 2010 onwards, funded by DG Research and Innovation under the 7th Framework Programme; and in ‘ETNA’, 2011-2014, funded by the Information Communication Technologies Policy Support Programme (ICT-PSP), under the Competitiveness and Innovation Framework

Programme (CIP). Partner in a total of nine projects.


Number of member groups: 105 member groups (mostly health NGOs) from 24 European countries.

Countries of member groups: Austria (9), Belgium (6), Bosnia, Bulgaria (7), Croatia (2), Cyprus (2), Czech Republic (3), Estonia, Finland (3), France (8), Germany (6), Greece (3), Hungary (4), Ireland (8), Italy (3), Lithuania, Macedonia (4), Netherlands (4), Norway (2), Portugal (5), Romania (10), Slovenia (2), Spain, UK (9).

Groups to which organisation is affi liated: European Citizen Action Service (ECAS); Platform of European Social NGOs (Social Platform).

Current affi liations with the EU: Member of the NGO Liaison Group of the European Economic and Social Committee. Sits on the High-Level Group on Disability of DG Employment, Social Affairs and Equal Opportunities. Participates in the Disability Intergroup of the European Parliament. Member of the Social Economy Intergroup of the European Parliament. Member of the Interest Group on Carers of the European Parliament.

Revenue



Main sources of funding: 2009, according to the Register of the European Transparency Initiative (ETI): European Commission (€417,000); membership dues (€216,000).

European Association of Service Providers for Persons with Disabilities(EASPD) http://www.easpd.eu

Disability


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58 Avenue Bosquet75007 ParisFrance

T: +33-1-47-05-38-20

F: +33-1-47-05-38-21


Main contact: Birgitta Blokland




Key activities: Regional body of the World Blind Union (WBU). Promotes and represents the interests of all blind and partially-sighted people in Europe (including those with additional disabilities) with the goal of achieving equal rights as citizens and full participation in society.

Key campaigns: Long-running campaign for an international treaty allowing better access to books in accessible formats (braille, large print, audio). The European Parliament voted its support in May 2011.

Objectives for 2012 onwards: “EBU will help implementing EU Employment and Disability Strategies, and will work on the EBU legislative database on national accessibility of public places for guide dogs, and on income granted to visually-impaired (VI) people with no sources of revenue.”

Current EU-funded projects: Partner in ‘Vision in Enterprise’, 2011-2012, funded by the Lifelong Learning Programme of the Education, Audiovisual and Culture Executive Agency (EACEA).



Countries of member groups: Albania, Austria, Belgium, Bosnia, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Malta, Montenegro, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: European Disability Forum (EDF); Platform of European Social NGOs (Social Platform); World Blind Union (WBU).

Revenue


Main sources of funding: 2010, according to the Register of the European Transparency Initiative (ETI): European Commission (€223,000); member contributions (€312,000); one medical device company (ConvaTec).

European Blind Union(EBU)http://www.euroblind.org

Disability


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c/o EFNS Offi ceDepartment of PharmacologyUniversity of Florence6 Viale Pieraccini50139 Florence, Italy

T: +39-055-43-62-098

F: +39-055-42-71-280

Email: evelyn.sipido@unifi .it

Main contact: Evelyn Sipido

Position of main contact: Liaison Offi cer and Administrator



Key activities: Coordinating council of all European organisations interested in neurology, neurosurgery, psychiatry, basic brain research (neuroscience), plus patient organisations and industry. Interacts with the European Commission, the European Parliament, and the World Health Organization (WHO).

Key campaigns: Embarked on a major strategy to designate ‘2014 European Year of the Brain (EYoB)’. Campaigns in the European Parliament on the importance of brain research. Member of the ‘Alliance for MRI’.

Objectives for 2012 onwards: “The Hungarian and Polish 2011 European Presidencies have both featured brain diseases as part of their Presidential Priorities. We aim to continue this into future European Council Presidencies. The EYOB is an opportunity; we must make the most of it.”

Current EU-funded projects: Partner in ‘Psychosocial Factors Relevant to Brain Disorders in Europe (PARADISE)’, 2010-2012, funded by the 7th Framework Programme.


Number of member groups: 2 European patient organisations (EFNA and GAMIAN-Europe); 5 European professional organisations (AEP, EANS, ECNP, EFNS, and FENS); industrial partners.

Groups to which organisation is affi liated: European Coalition for Biomedical Research (ECBR).

Current affi liations with the EU: Hopes to partner with DG Research and Innovation on planning the ‘2014 European Year of the Brain (EYOB)’.

Revenue


Pharmaceutical funding: 2009: Eli Lilly; Genzyme; Lundbeck; Organon; Pfi zer Germany; Sanofi Aventis; Servier; Solvay; Teva; UCB.

Main sources of funding: European Commission; pharmaceutical companies; a medical device company (Medtronic); member organisations.

European Brain Council(EBC)http://www.europeanbraincouncil.org



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EBIS SecretariatCentre La BraiseRue de la Vigne 561070 BrusselsBelgium

T: +32-2-522-20-03F: +32-2-523-39-52Email: [email protected]

Main contact: Katherine Allen


Name of representative in Brussels: Katherine Allen





Key activities: European association dedicated to activities that support traumatic brain-injured people and victims of acquired cerebral lesions (covering anoxia, brain tumour, encephalitis, and stroke). Brings together a variety of patient associations and professionals involved in the fi eld of brain injury.

Objectives for 2012 onwards: “EBIS believes that actions in favour of head-injured people can only be successful if the essential links between medical, scientifi c and social efforts are continually strengthened and improved.”

Current EU-funded projects: Two EBIS members are partnering in ‘Project: Acquired Brain Injury (ABI)’, 2009-2011, funded by the Lifelong Learning Programme of the Education, Audiovisual and Culture Executive Agency (EACEA).


Number of member groups: Member organisations and individual members from 16 European countries.

Countries of member groups: Austria, Belgium, Denmark, France, Germany, Greece, Ireland, Italy, Luxembourg, Netherlands, Portugal, Slovenia, Spain, Sweden, Switzerland, UK.

Revenue

Main sources of funding: King Baudouin Foundation; membership fees. The European Commission funds several seminars each year (including a summer school).

European Brain Injury Society(EBIS)http://www.ebissociety.org



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Avenue E. Mounier 831200 BrusselsBelgium

T: +32-2-775-02-01

F: +32-2-775-02-00


Main contact: Michel Ballieu


Name of representative in Brussels: Ingrid van den Neucker

Position of representative in Brussels: Head of External Relations Unit




Key activities: Supports the activities of patient advocates and organisations with the aim of helping them to better respond to patients’ needs and wishes. Although largely a clinical and academic-driven body (representing 50,000 experts involved in cancer research, treatment and care), patient groups such as Europa Uomo, Europa Donna and Myeloma Euronet are involved as sustaining members.

Key campaigns: ‘European Week Against Cancer’ (every May).

Objectives for 2012 onwards: “ECCO continues to expand its outreach and education with biennial Congresses, and with many new initiatives and programmes—such as the ECCO eLEARNING courses, and an online Patient Information section driven by dedicated focus groups in the form of offi cially-appointed Committees.”

Current EU-funded projects: Lead organisation in ‘Eurocancercoms’, 2009-2011, funded by the 7th Framework Programme. Partner in the following three projects also funded by the 7th Framework Programme: ‘European Network for Cancer research in Children and Adolescents

(ENCCA)’, 2011 onwards; ‘EurocanPlatform’, 2010-2015; and ‘MIRACLE’, 2010-2014. Partner in ‘Oncovideos’, 2010-2011, funded by the DG Education and Culture Lifelong Learning Programme.


Number of member groups: 24 member organisations.

Groups to which organisation is affi liated: Associations Conference Forum (AC Forum); Chronic Disease Alliance (CDA); ecancermedicalscience Foundation; European Cervical Cancer Association (ECCA); European Foundation for Quality in E-learning (EFQUEL); European Public Health Alliance (EPHA); Federation of European and International Associations (FAIB); International Union Against Cancer (UICC).

European CanCer Organisation(ECCO)http://www.ecco-org.eu

Cancer


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2nd fl oor, Microbusiness Centre26 rue de la Loi1040 BrusselsBelgium

T: +32-(0)-2-88-88-943


Main contact: Denis Horgan

Position of main contact: Head of External Affairs

Name of representative in Brussels: Denis Horgan

Position of representative in Brussels: Head of External Affairs



Geographic areas of operation: Mainly Europe.

Key activities: Virtual European network of cancer patient organisations. Committed to improving cancer prevention, screening, early diagnosis, and best treatment, and to reducing inequality across the EU. Seeks to ensure that policymakers, politicians, health professionals, the media and the public recognise the serious nature of cancer, and the need for concerted action to reduce death and suffering.

Key campaigns: ‘Forum Against Cancer Europe’ (FACE).

Objectives for 2012 onwards: “ECPC will strive to ensure that cancer research in the EU addresses the range of needs of cancer patients (of all variants of the disease), and focuses on translation into therapies, all in a way that minimises waste of money, expertise and time.”


Number of member groups: 235 full member groups from 28 European countries.

Countries of member groups: Austria (4), Belgium (7), Bulgaria (4), Cyprus (3), Czech Republic (4), Denmark (3), Estonia (2), Finland, France (2), Germany (10), Greece (8), Hungary (3), Ireland (3), Italy (54), Latvia (2), Lithuania (5), Luxembourg (2), Malta, Netherlands (27), Poland (11), Portugal (3), Romania (10), Slovakia, Slovenia (2), Spain (6), Sweden (4), Switzerland, UK (52).

Groups to which organisation is affi liated: European Platform for Patients’ Organisations, Science and Industry (EPPOSI); Patients Network for Medical Research and Health (EGAN).

Current affi liations with the EU: Member of the DG SANCO EU Health Policy Forum (EUHPF). Involved in the activities of the European Medicines Agency (EMA). Member of the EUnetHTA Joint Action (JA) Stakeholder Forum.

Revenue


Pharmaceutical funding: 2010, 8 sustaining partners: Amgen; GSK; Lilly; Merck; Novartis; Pfi zer; Sanofi Pasteur MSD. 2009 sustaining partners were each required to give €30,000. GSK notes that its 2010 grant of €35,000 represented 9% of the organisation’s income that year.


European Cancer Patient Coalition(ECPC)http://www.ecpc-online.org

Cancer


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53

121 Rue Jourdan1060 BrusselsBelgium

T: +32-2-538-2833

F: +32-2-538-5833


Main contact: Philip Davies


Name of representative in Brussels: Philip Davies

Position of representative in Brussels: Director General



Geographic areas of operation: Europe (and countries to the east of Europe).

Key activities: Network of organisations and individuals from across Europe that have joined forces to raise awareness of cervical cancer and how it can be prevented. Prepares and distributes evidence-based information on the causes of cervical cancer, and on the importance of organised programmes to prevent the disease. Aims its work at the general public, medical professionals, and public health offi cials.

Key campaigns: Founded and continues to run: ‘European Cervical Cancer Prevention Week’ (every January); ‘Pearl of Wisdom Campaign to Prevent Cervical Cancer’; and the ‘Stop Cervical Cancer’ online petition.

Objectives for 2012 onwards: “The primary objective of the ECCA beyond 2011 is the development of organised systems for the transfer of knowledge and expertise from Western Europe to Eastern Europe.”

Current EU-funded projects: Partner in three projects: ‘Health Economic Modelling of PREvention strategies for Hpv-related Diseases in European Countries (PREHDICT)’,

2010-2013, funded by the 7th Framework Programme; ‘Development of a Point-of-Care Detection Unit, Microfl uidic Chip, and Self-Sampling Device for Cervical-Cancer Screening (SelfPOCNAD)’, 2010-2012, also funded by the 7th Framework Programme; and ‘Multi-type Content Repurposing and Sharing in Medical Education (mEducator)’, 2008 onwards, funded by the eContentplus Programme.


Number of member groups: 96 member organisations (not all health NGOs) from 33 European countries.

Countries of member groups: Albania, Austria, Belgium, Bosnia, Bulgaria (3), Croatia (5), Cyprus (2), Czech Republic (4), Denmark, Estonia (2), Finland (2), France (5), Germany (3), Greece (3), Hungary, Iceland, Ireland (2), Italy (9), Latvia (2), Lithuania (3), Macedonia (2), Netherlands (2), Norway (3), Poland (3), Portugal (5), Romania (9), Serbia (2), Slovakia, Slovenia (4), Spain (3), Sweden, Turkey (3), UK (6).

Revenue


Pharmaceutical funding: 2010: GSK. GSK notes that its 2010 grant of €150,000 represented about 25% of the organisation’s income that year.

Main sources of funding: 2010: sales of the Pearl of Wisdom (€229,000); pharmaceutical companies (€150,000); public donations (€149,000); European Commission (€42,000); medical device company (Becton-Dickinson, €25,000).

European Cervical Cancer Association(ECCA)http://www.ecca.info

Cancer


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Ahornstraße 1385241 HebertshausenGermany

T: +49-813-127-3387

F: +49-813-127-3545


Main contact: Gabi Birle

Position of main contact: Vice President and Secretary



Key activities: Support group for patients with chromosome-11 disorders, their families and relatives. Enables parents to make contact, and information to be collected and exchanged. Follows and supports scientifi c developments regarding chromosome 11q disorders.

Objectives for 2012 onwards: “Every other year, we organise a European conference for families and researchers. The event is our major platform to exchange information and experiences. The results of the conference are published.”


Number of member groups: Around 100 families from across Europe.

Groups to which organisation is affi liated: Allianz Chronischer Selterner Erkrankungen (ACHSE) e.V.; Eurochromnet; European Organisation for Rare Diseases (EURORDIS); Kindernetzwerk e.V.; Orphanet.

Revenue

Most recent yearly revenue: Under €50,000.

Main sources of funding: Donations; membership fees.

European Chromosome 11q Network(11q Network)http://www.chromosome11.eu



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c/o National Centre for Independent LivingUnit 3.40, Canterbury Court1-3 Brixton RoadLondon, SW9 6DEUK

T: +44-(0)20-7587-3982


Main contact: Ines Buli_




Key activities: Europe-wide initiative that works towards the social inclusion of people with a disability or a mental health problem by promoting the provision of comprehensive, quality, community-based services as an alternative to institutionalisation. Encourages good practice in community living, and engages in monitoring and advocacy activities at European level.

Key campaigns: ‘Free Our People Now!’, a 2011 campaign for deinstitutionalisation.

Current EU-funded projects: Partner in two projects: ‘Fundamental Rights of People with Intellectual Disabilities and People with Mental Health Problems’, 2009-2012, funded by the European Union Agency for Fundamental Rights (FRA); and ‘Disability Rights Expanding Accessible Markets (DREAM)’, 2011 onwards, funded by the Marie Curie Initial Training Network Funding Programme of the 7th Framework Programme.



Countries of member groups: Austria, Belgium (3), Bosnia (3), Bulgaria (5), Croatia (4), Czech Republic, Estonia, Finland, Germany (6), Greece (3), Hungary (3), Ireland (2), Italy, Kosovo (3), Latvia (4), Macedonia, Netherlands (2), Poland, Romania (3), Serbia, Slovakia, UK (7).

Groups to which organisation is affi liated: European Network on Independent Living (ENIL).

Revenue


Main sources of funding: 2010: Open Society Mental Health Initiative (OSMHI).

European Coalition for Community Living(ECCL)http://www.community-living.info

Disability


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2 Whitehorse MewsWestminster Bridge RoadLondon, SE1 7QDUK

T: +44-(0)20-7401-9942

F: +44-(0)20-7401-9690


Main contact: Colin Webb



Geographic areas of operation: Europe (and several African countries).

Key activities: Self-help organisation for (and of) people living with HIV/AIDS, hepatitis, and tuberculosis. Seeks to establish a democratic and accountable patient voice at European level, and is involved in a number of issues of importance to patients within the EU.

Key campaigns: A patient survey on access to information about prescription medicines (results to be used to infl uence policymakers in the European Parliament).


Number of member groups: None.


Revenue


Pharmaceutical funding: 2009: European Federation of Pharmaceutical Industries and Associations (EFPIA); GSK; ViiV.

European Coalition of Positive People(ECPP)http://www.ecpp.co.uk

HIV/AIDS


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Avenue de Tervueren 12, bte31040 BrusselsBelgium

T: +32-2-285-00-70

F: +32-2-231-07-57


Main contact: Rodrigo Gouveia


Name of representative in Brussels: Rodrigo Gouveia





Key activities: Represents the interests of consumer cooperatives and their 23 million consumer-members across 17 European countries to EU institutions. Operates in consumer food policy, environmental and ethical policy, and co-operative enterprises policy.

Key campaigns: ‘International Year of Co-operatives 2012’. ‘Fight Against Obesity’ (Database of Initiatives).

Objectives for 2012 onwards: “Euro Coop welcomes the priorities set out by the European Commission in the preparation of the next (post-2013) Consumer Policy Strategy. Euro Coop believes that, in spite of fi nancial constraints, the European Consumer Policy should remain a key priority for the EU.”



Countries of member groups: Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, Germany, Hungary, Italy, Netherlands, Norway, Portugal, Romania, Slovakia, Spain, Sweden, UK.

Groups to which organisation is affi liated: Cooperatives Europe [International Cooperative Alliance-European region].

Current affi liations with the EU: Member of the European Food Safety Authority (EFSA) Stakeholder Consultative Platform.

Revenue



Main sources of funding: 2009, according to the Register of the European Transparency Initiative (ETI): membership contributions (€521,000).

European Community of Consumer Co-operatives(Euro Coop)http://www.eurocoop.coop

Healthcare / Public Health


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c/o BVHKKasinostraße 6652066 AachenGermany

T: +49-241-912-332


Main contact: Hermine Nock

Position of main contact: Spokesperson



Key activities: Umbrella organisation formed to represent the interests of children and adults with congenital heart disease. Links parent and patient organisations with professionals. Works to improve care and treatment, and educates about care for adults with congenital heart disease.



Countries of member groups: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany (2), Greece, Hungary, Iceland, Ireland, Italy (2), Lithuania, Luxembourg, Netherlands, Norway, Poland (2), Romania (2), Slovenia, Spain (3), Sweden, UK (4).


European Congenital Heart Disease Organisation(ECHDO)http://www.echdo.org



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Utrechtseweg 623700 AN ZeistNetherlands

T: +31-30-694-55-40

F: +31-30-694-55-90


Main contact: Adrienne Thier


Name of representative in Brussels: Adrienne Thier





Key activities: Represents people with special needs, looking after their interests on a European level. Member organisations provide a wide range of facilities, including education, work, residential care, family support, home help, and out-patient services. Therapies used include medical care and treatment, physiotherapy, and several forms of art therapy.

Key campaigns: Participates in the one-million signature ‘European Alliance of Initiatives for Applied Anthroposophy (ELIANT)’ campaign.

Objectives for 2012 onwards: “Unfortunately, the 2010 European Disability Strategy does not pay attention to individuals with complex dependency needs (an apparently forgotten set of people). Getting the European Commission to consider people with complex dependency needs must be a spearhead in ECCE’s strategy.”



Countries of member groups: Austria (2), Belgium (3), Czech Republic, Denmark, France (2), Germany (2), Greece, Italy (2), Netherlands (3), Norway, Romania (2), Sweden (2), Switzerland (2), UK (2).

Groups to which organisation is affi liated: European Disability Forum (EDF); Platform of European Social NGOs (Social Platform).

European Co-operation in Anthroposophical Curative Education and Social Therapy(ECCE) http://www.ecce.eu

Disability


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EDbN Secretariatc/o Spanish Federation of DeafblindnessC/ Joanot Martorell, 25 local08014 BarcelonaCatalonia, Spain

T: +34-93-331-73-66


Main contact: Ricard Lopez

Position of main contact: Communication Offi cer



Key activities: Organisation that brings together families, professionals and deaf-blind people. Committed to campaigning to promote the rights and interests of people who are deaf-blind, and runs an electronic group to share news and information, and to coordinate training and projects of common interest.



Countries of member groups: Austria, Bulgaria, Denmark (3), France, Germany, Italy, Netherlands, Slovakia, Slovenia, Spain (2), Sweden, UK (2).

Groups to which organisation is affi liated: Deafblind International (DBI); European Disability Forum (EDF).

European Deafblind Network(EDbN)http://www.edbn.org

Disability


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Avenue des Mimosas 57Woluwe Saint-Pierre1150 BrusselsBelgium

T: +32-(0)2-734-29-80

F: +39-(0)3-098-820-61


Main contact: Dr Vincenzo Costigliola


Name of representative in Brussels: Dr Vincenzo Costigliola





Key activities: Alliance of organisations, patients, researchers and healthcare professionals from across Europe. Raises awareness of the impact of depression on people’s lives, challenges stigma and discrimination, and provides a voice for people who experience depression. Members exchange information and best practices, co-ordinate pan-European actions, and extend the reach of their campaigns.

Key campaigns: Organises ‘European Depression Day’ (every October).

Objectives for 2012 onwards: “The WHO reports that, by 2020, depression is set to become the second-biggest health burden after cardiovascular disease — which is why it needs to be high on the EU healthcare agenda. EDA plans to develop a manifesto for change.”


Number of member groups: 19 representatives (mainly individuals) from 19 European countries.

Countries of member groups: Austria; Belgium; Croatia; Czech Republic; France; Germany; Greece; Hungary; Italy; Lithuania; Malta; Poland; Portugal; Serbia; Slovakia; Slovenia; Spain; Switzerland; UK.

Revenue

Main sources of funding: Centro Studi Psichiatrici; European Medical Association (EMA); Centro Lombardo Recuperi Industriali s.r.l.; Grafi che Luvriti.

European Depression Association(EDA)http://www.edaweb.eu

Mental Health


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35 Square de Meeus1000 BrusselsBelgium

T: +32-2-282-46-00

F: +32-2-282-46-09


Main contact: Javier Güemes

Position of main contact: Acting Director (until January 2012)

Name of representative in Brussels: Janina Arsenjeva

Position of representative in Brussels: Policy and European Parliamentary Offi cer




Key activities: Independent NGO that represents the interests of 80 million Europeans with a disability. Monitors EU initiatives, and proposes new legislation to advance the rights of people with a disability. Meets with key decision makers to ensure that disability is one of their top priorities.

Key campaigns: ‘Freedom of Movement’. European comprehensive disability-specifi c legislation. European e-accessibility binding legislation. The ‘UN Convention on the Rights of Persons with Disabilities’.

Objectives for 2012 onwards: “We still have to make sure that disability is a priority in the Europe 2020 strategy, and that the EU institutions will include us in all the relevant decision-making processes — especially in the implementation of the ‘UN Convention on the Rights of Persons with Disabilities’.”

Current EU-funded projects: Partner in two projects: ‘Academic Network of European Disability Experts (ANED)’, 2008-2011, funded by the DG Employment, Social Affairs and Inclusion PROGRESS Programme; and ‘Disability Rights Expanding Accessible Markets (DREAM)’, 2011 onwards, funded by the Marie Curie Initial Training Network Funding Programme of the 7th Framework Programme.


Number of member groups: 54 full member organisations (plus 38 associate, 15 ordinary, and 3 observer member groups).

Countries of member groups: All European countries.

Groups to which organisation is affi liated: European Women’s Lobby (EWL); International Disability Alliance (IDA); Platform of European Social NGOs (Social Platform).

Revenue


Main sources of funding: 2010: European Commission (€950,000); membership fees (€300,000); project funding (€400,000).

European Disability Forum(EDF)http://www.edf-feph.org

Disability


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c/o Stichting Down Syndroom (SDS)Hoogeveenseweg 38 Gebouw U7943 KA MeppelNetherlands

T: +31-(0)-522-281-337


Main contact: Erik de Graaf




Key activities: Network of associations for Down syndrome in Europe. Encourages scientifi c efforts towards improvements in medical care, education, rehabilitation, vocational training, employment, leisure, and independent living for people with Down syndrome. A major goal for the Association is the improvement of the quality of life of people with Down syndrome (and their families).

Key campaigns: Supports ‘World Down Syndrome Day’ (every March).

Objectives for 2012 onwards: “EDSA is seeking member associations from all of the countries of Europe (whether or not they are in the European Community at this time).”



Countries of member groups: Austria, Belgium, Bosnia, Croatia, Cyprus, Czech Republic, Denmark, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Spain, Sweden, Switzerland, UK.


European Down Syndrome Association(EDSA)http://www.edsa.info /http://www.edsa.eu



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Penzinger Straße 66/13A-1140 ViennaAustria


Main contact: Michael Kalmár




Key activities: Pan-European organisation of dyslexia associations from across Europe. Aims to raise awareness about dyslexia, to make information on the subject available to all, and to encourage research into the cause(s), diagnosis, intervention and prevention of dyslexia. Assists in developing support for dyslexic people.

Key campaigns: ‘Books Without Borders’ and ‘Book Famine’, exemptions of copyright for accessible formats at the World Intellectual Property Organization (WIPO).

Objectives for 2012 onwards: “The 4th All-European Dyslexia Conference of 2013 is part of EDA’s drive to ensure that every child and adult with dyslexia has the right to access appropriate identifi cation, support, and opportunities in education, training, and employment.”

Current EU-funded projects: Two projects in submission at the time of publication of this Directory.



Countries of member groups: Austria (5), Belgium (2), Croatia, Cyprus (2), Czech Republic (2), Denmark (2), Finland, France (2), Germany, Greece, Ireland, Italy, Lithuania, Luxembourg, Malta, Netherlands (2), Norway, Poland, Portugal (2), Slovenia, Spain (2), Sweden (2), Switzerland, UK (2).

Groups to which organisation is affi liated: European Disability Forum (EDF); Patients Network for Medical Research and Health (EGAN).

Revenue

Main sources of funding: Membership subscriptions; participation in EU projects; conference fees.

European Dyslexia Association(EDA)http://www.eda-info.eu

Learning Disability


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69 East King StreetHelensburghG84 7REUK

T: +44-1436-678-799

F: +44-1436-678-799


Main contact: Alistair Newton




Key activities: Advocates for dystonia patients and their families at European level. Has brought an increasing number of dystonia groups and people together to share their experiences and knowledge.

Key campaigns: Supports the designation of ‘2014 European Year of the Brain (EYoB)’.

Objectives for 2012 onwards: “A ‘European Year of the Brain’ would bring enormous benefi ts for dystonia patients. More funding would be available for research, and EU Member Nations would organise events, awareness, and research at the national level.”



Countries of member groups: Austria, Belgium, Croatia, Denmark, Finland, France, Germany, Ireland, Italy, Netherlands, Norway, Portugal, Spain (2), Sweden, Switzerland, UK (2).

Groups to which organisation is affi liated: European Federation of Neurological Associations (EFNA); Patients Network for Medical Research and Health (EGAN).

Revenue

Pharmaceutical funding: Allergan; Eisai; Ipsen; Merz.

Main sources of funding: Pharmaceutical companies; a medical device company; a foundation; membership fees.

European Dystonia Federation(EDF)http://www.dystonia-europe.org



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The EEA states that it is an umbrella “coalition”, and has no formal headquarters (though is based in London, UK).

T: +44-(0)77-1006-5164


Main contact: Lone Hummelshoj




Key activities: Umbrella organistion for national endometriosis support organisations in Europe. Members collaborate and provide a pan-European base from which to help and support the estimated one-in-ten women who live with endometriosis.

Key campaigns: Runs ‘Endometriosis Awareness Week’ (every March).



Countries of member groups: Austria, Belgium, Denmark, Finland, France, Germany, Ireland, Italy, Malta, Netherlands, Norway, Poland, Portugal, Spain, Sweden, Switzerland, UK (2).

Revenue


Main sources of funding: Advertisements on the endometriosis.org website; donations.

European Endometriosis Alliance(EEA)http://endometriosis.org/news/support-awareness/european-endometriosis-alliance/



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EFTA-CIM32 avenue du Bois Williame5101 ErpentNamurBelgium

T: +32-81-31-04-39

F: +32-81-31-01-76


Main contact: Fabienne Dardenne

Position of main contact: Head of Secretariat

Name of representative in Brussels: Jacques Pluymaekers

Position of representative in Brussels: General Treasurer




Key activities: Brings together individual practitioners, training institutes, and national family therapy organisations in Europe. Facilitates the exchange of ideas and experience, spreads information about family therapy, conducts training, and promotes research.



Countries of member groups: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Macedonia, Malta, Netherlands, Norway, Poland, Portugal, Serbia, Spain, Sweden, Switzerland, Turkey, UK.

Revenue

Main sources of funding: Membership contributions.

European Family Therapy Association(EFTA)http://www.europeanfamilytherapy.eu

Families and Health


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35 Rue du Congrès1000 BrusselsBelgium

T: +32-(0)-22-27-27-12F: +32-(0)-22-18-31-41Email: [email protected] contact: Susanna Palkonen

Position of main contact: Executive Offi cer

Name of representative in Brussels: Susanna Palkonen

Position of representative in Brussels: Executive Offi cer




Key activities: European network of national patient associations specialising in asthma, allergy, and chronic obstructive pulmonary disease (COPD). Combines the activities of the national associations for results at European level, and to improve the health and quality of life of people in Europe with these diseases. EFA member organisations have over 400,000 patient and carer members.

Key campaigns: ‘Call to Action on COPD’. ‘Food Allergen Labeling’.

Objectives for 2012 onwards: “EFA will be working on member involvement horizontally; on building and executing EFA-owned and -initiated projects; on professional and effective involvement at the European Medicines Agency (EMA); and on fundraising.”

Current EU-funded projects: Partner in four projects: ‘Airway Disease Predicting Outcomes through Patient Specifi c Computational Modelling (AirPROM)’, 2011-2016, funded by the 7th Framework Programme; ‘Unbiased BIOmarkers in PREDiction of respiratory disease outcomes (U-BIOPRED)’, 2008-2013, partly funded by the 7th Framework Programme; ‘HealthVent’, 2010-2012, funded by the Executive Agency for Health and Consumers (EAHC); and ‘Mechanisms of the Development of ALLergy (MeDALL)’, 2011-2014, funded by the Health Cooperation Work Programme of the 7th Framework Programme.



Countries of member groups: Austria, Belgium (3), Bulgaria, Czech Republic,

Denmark, Finland (2), France (3), Germany, Greece, Ireland, Italy (2), Lithuania (3), Netherlands (4), Norway, Poland, Portugal, Slovenia, Sweden (2), Switzerland (2), UK (2).

Groups to which organisation is affi liated: European Patients’ Forum (EPF); European Network for Smoking and Tobacco Prevention (ENSP); Global Alliance against Chronic Respiratory Diseases (GARD); Health and Environment Alliance (HEAL); International COPD Coalition (ICC).

Current affi liations with the EU: Member of the Patients and Consumers Working Party (PCWP) of the European Medicines Agency (EMA).

Revenue


Pharmaceutical funding: 2011: ALK Abelló (€55,000); AstraZeneca (€50,000); Boehringer Ingelheim (€50,000); Chiesi (€30,000); GSK (€75,000); Novartis (€75,000); Nycomed (€50,000); Pfi zer(€50,000); Stallergenes (€55,000).

Main sources of funding: 2011: Pharmaceutical companies (€490,000); DG Research and Innovation and DG SANCO (€73,000); gas manufacturer _ Air Liquide Healthcare (€50,000); membership fees (€30,000).

European Federation of Allergy and Airways Diseases Patients Associations(EFA) http://www.efanet.org

Respiratory


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Diestsevest 1003000 LeuvenBelgium

T: +32-16-74-50-40

F: +32-16-74-50-49


Main contact: Kevin Jones Position of main contact: Secretary GeneralName of representative in Brussels: Kevin JonesPosition of representative in Brussels: Secretary GeneralContact for representative in Brussels: secr.general.offi [email protected]



Key activities: Representative body for family and carer associations throughout Europe. Promotes the interests and wellbeing of people with mental illness, and aims to strengthen the efforts of member associations to improve the support, standard of treatment, care, and quality of life for people with severe mental illness (and their families). Enables member associations to combine efforts, and to act jointly at European level. Defends the human rights and interests of people with severe mental illness.



Countries of member groups: Austria, Belgium (2), Cyprus (2), Czech Republic, Denmark (3), Finland (2), France, Germany (2), Greece (6), Hungary, Ireland, Italy (5), Lithuania, Malta, Netherlands (2), Norway, Poland (2), Portugal (3), Romania, Slovenia (3), Spain (3), Sweden, Switzerland, UK (3).

Groups to which organisation is affi liated: European Disability Forum (EDF); European Patients’ Forum (EPF).

Current affi liations with the EU: Member of the DG SANCO EU Health Policy Forum (EUHPF).

Revenue

Pharmaceutical funding: AstraZeneca; Eli Lilly and Co; Janssen; Pfi zer Inc.

European Federation of Associations of Families of People with Mental Illness(EUFAMI) http://www.eufami.org

Families and Health


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4 rue Paul Demange78290 Croissy Sur SeineFrance


Main contact: Dr. Françoise Courtois

Position of main contact: General secretary



Key activities: Dedicated to raising public awareness of the condition, and emphasising the importance of prevention, family screening, and early treatment. Supplies the medical profession with valuable information on the subject.

Key campaigns: Campaigning for a ‘European Hereditary Haemochromatosis (HH) Day’.



Countries of member groups: Belgium, France, Germany, Hungary, Iceland, Ireland, Norway, Portugal, Spain, UK.

Groups to which organisation is affi liated: European Organisation for Rare Diseases (EURORDIS); European Patients’ Forum (EPF); Health First Europe (HFE).

Revenue


Pharmaceutical funding: Novartis (website sponsorship).

Main sources of funding: Annual membership fees; pharmaceutical company.

European Federation of Associations of Patients with Haemochromatosis(EFAPH) http://www.european-haemochromatosis.eu

Blood Disorders / Genetic and Rare Diseases


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Rue Vieux Marché aux Grain, 481000 BrusselsBelgium

T: +32-2-540-84-34

F: +32-2-540-84-34


Main contact: Chayim Bell


Name of representative in Brussels: Luisa Avedano

Position of representative in Brussels: Chief Executive Offi cer




Key activities: Umbrella organisation representing national patients’ associations that specialise in infl ammatory bowel disease (IBD). Aims to improve the wellbeing of the 1.2 million Europeans with Crohn’s and colitis by facilitating the exchange of information, the promotion of cross-border activities, and by encouraging Scientifi c research. Provides a patient perspective to European healthcare professionals and stakeholders.

Key campaigns: EFCCA ‘IMPACT’ survey. Supports ‘World IBD Day’ (every May).

Objectives for 2012 onwards: “EFCCA will document regulations in member countries to understand the current situation. We will provide the information to member associations (and relevant authorities), develop standards for healthcare and social security in Europe for people with IBD, and lobby European politicians.”



Countries of member groups: Austria, Belgium (2), Croatia, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Hungary, Iceland, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK.

Groups to which organisation is affi liated: European Disability Forum (EDF); European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); International Alliance of Patients’ Organizations (IAPO); Patients Network for Medical Research and Health (EGAN).

Revenue

Pharmaceutical funding: Abbott (funding the ‘IMPACT’ survey); Ferring Pharmaceuticals; MSD; Otsuka Pharmaceuticals; Vifor Pharma AG.

Main sources of funding: Pharmaceutical companies; members’ contributions; individual supporters.

European Federation of Crohn’s and Ulcerative Colitis Associations(EFCCA) http://www.efcca.org

Gastrointestinal


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c/o Hörselskadades RiksförbundBox 6605113 84 StockholmSweden

T: +46-8-457-5500

F: +46-8-457-5503


Main contact: Jan Lamby




Key activities: European organisation of national associations of/for hard-of-hearing and late-deafened people, parents’ organisations, and professional organisations. Represents hard-of-hearing people at European level in dialogue with the European Union, the Members of the European Parliament, and other European authorities.

Key campaigns: EFHOH’s pan-European campaign, ‘Subtitling Access in all Audiovisual Material in the EU’.

Objectives for 2012 onwards: “One of the top priorities of EFHOH is subtitling of 100% of public TV programmes all over the EU by 2020, with simple technical standards, and consumer friendly rules — part of our emphasis on improving quality of life.”



Countries of member groups: Austria, Belgium, Croatia, Czech Republic (2), Denmark, Estonia, Finland (2), France, Germany (3), Hungary, Ireland, Netherlands (2), Norway, Slovakia, Slovenia, Sweden, Switzerland (2), Turkey, UK (3).

Groups to which organisation is affi liated: European Disability Forum (EDF); International Federation of Hard of Hearing People (IFHOH).

Current affi liations with the EU: Invited to attend the European Parliament Disability Intergroup.

Revenue



Main sources of funding: 2011: Medical device companies (including AnnieS; Bernafon AG; GN Resound; ISOC; Oticon A/S; Phonak AG; Pro Audito Winterthur; Siemens Audiologische Technik GmbH; and Widex APS); membership fees.

European Federation of Hard of Hearing People(EFHOH)http://www.efhoh.org

Disability


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Chauseé de Bruxelles 132Box 11190 Brussels, Belgium


Main contact: Gabriella de Angelis Position of main contact: SecretaryName of representative in Brussels: Jacques HirschPosition of representative in Brussels: Vice-President




Key activities: Represents patients in Europe who use or seek homeopathic treatment. Promotes the harmonisation of the practice of homeopathy in Europe, and advocates its integration into European healthcare. Member local, regional, and national groups share the same ideals about homeopathy. Defends the rights and interests of patients in Europe who use or seek homeopathic treatment.

Objectives for 2012 onwards: “EFHPA will be lobbying for harmonisation of the EU Directives pertinent to homeopathic medicines throughout Europe, leading to equal availability of the treatments and medicines.”



Countries of member groups: Austria (2), Belgium (2), Bulgaria, France (4), Germany (2), Greece, Hungary, Iceland, Italy (2), Netherlands, Norway, Poland, Spain, Switzerland, UK.


Revenue

Main sources of funding: Membership fees.

European Federation of Homeopathic Patients’ Associations(EFHPA) http://www.efhpa.com

Alternative and Complementary Medicines


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74

194 Chaussée de Louvain1210 BrusselsBelgium

T: +32-253-866-69

F: +32-253-941-74


Main contact: Freek Spinnewijn


Name of representative in Brussels: Freek Spinnewijn





Key activities: Federation that brings together the not-for-profi t sector working with people who are homeless in Europe. Carries out research, advocacy, and policy activities. Has developed a broad programme of work on health and homelessness, including a magazine on the subject.

Key campaigns: ‘Ending Homelessness’.

Objectives for 2012 onwards: “FEANTSA will be taking Europe-wide stocktaking of quality citeria in social services with the aim of evaluating the existing frameworks, their nature, and quality dimensions. This mapping exercise will result in our drafting a European Report.”



Countries of member groups: Austria, Belgium (5), Czech Republic (3), Denmark (7), Estonia (2), Finland (4), France (7), Germany (2), Greece (3), Hungary (6), Ireland (5), Italy (2), Latvia, Lithuania, Luxembourg, Macedonia, Malta, Netherlands, Norway (2), Poland (5), Portugal (7), Romania (2), Slovakia (2), Slovenia (3), Spain (15), Sweden (2), Switzerland, UK (25).

Groups to which organisation is affi liated: European Anti-Poverty Network (EAPN); European Housing Forum (EHF); European Public Health Alliance (EPHA); Platform of European Social NGOs (Social Platform).

Revenue

Main sources of funding: European Commission; members’ contributions.

European Federation of National Organisations Working with the Homeless(FEANTSA) http://www.feantsa.org



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Knights12 Station RoadBillingshurstWest Sussex, RH14 9REUK

T: +44-(0)-7809-772-962

F: +44-(0)-7809-772-962


Main contact: Amanda Worpole

Position of main contact: Administrator



Key activities: Brings together European umbrella organisations of neurological patient advocacy groups in a ‘partnership for progress.’ Aims to improve the quality of life for people with a neurological disorder, promote better access to information, increase public awareness, and enhance the priority given to neurology by policymakers.

Key campaigns: Supports designating ‘2014 European Year of the Brain (EYoB)’. Partner in ‘Can You Feel My Pain?’.


Number of member groups: 16 affi liated pan-European patient organisations.

Groups to which organisation is affi liated: European Brain Council (EBC). Co-founder of the European Pain Alliance (not formally constituted at the time of publication of this Directory).


Revenue


Pharmaceutical funding: 2010: Abbott; Bayer; Celgene; Eli Lilly; F Hoffmann-La Roche; Genus Pharmaceuticals; Johnson & Johnson; Merck Serono; MSD; Norgine; Novartis; Pfi zer; Sanofi -Aventis; Solvay; Takeda; Vifor Pharma AG. GSK notes that its 2010 grant of €42,000 represented 10% of the organisation’s revenue that year.

Main sources of funding: Pharmaceutical and medical device companies; European Federation of Neurological Societies (EFNS).

European Federation of Neurological Associations(EFNA)http://www.efna.net



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Prinsenhof 66666 CB HeterenNetherlands

T: +31-26-472-3588

F: +31-26-472-3524


Main contact: Jaap van der Spek


Name of representative in Brussels: Dirk Jarré





Key activities: A non-profi t and non-religious organisation that represents millions of older people in Europe. Promotes older people’s quality of life on societal, social, and political levels. Represents older people’s interests at European level, exchanges experiences, and co-ordinates activities, projects, and network initiatives.

Key campaigns: Supports ‘Human Rights Day’ (every December).

Current EU-funded projects: Partner in ‘Breaking the Taboo (2) – Developing and Testing Tools to Train the Trainer’, 2009-2011, funded by the DG Justice Daphne III Programme.


Number of member groups: 37 member national organisations from 28 European countries.

Countries of member groups: Albania, Austria (2), Belgium, Bulgaria, Croatia, Cyprus, Czech Republic (2), Denmark, Estonia (2), Finland, France, Germany (2), Hungary, Iceland (2), Ireland, Italy, Latvia, Lithuania, Luxembourg, Netherlands, Poland (2), Portugal, Romania, Slovakia (2), Slovenia, Spain, Switzerland (2), UK (2).

Groups to which organisation is affi liated: European Older People’s Platform (Age); Platform of European Social NGOs (Social Platform).

Current affi liations with the EU: Only indirectly, via the two ‘platform’ umbrella groups to which EURAG is affi liated.

Revenue

Most recent yearly revenue: EURAG notes that it does not give out information on its annual revenue.


Main sources of funding: Membership fees; advertisement banner on website; European Commission project funding.

European Federation of Older Persons(EURAG)http://www.eurageurope.org

Older People


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FEPEDA SecretariatTeijulantie 1821420 LietoFinland

T: +358-40-7589-539


Main contact: Sari Paloposki

Position of main contact: Head of Secretariat



Key activities: Represents associations of parents and friends of deaf and hard-of-hearing children at a European level. Brings together national associations of parents of hearing-impaired children, encourages cooperation and the exchange of information, and works to improve the quality of life of deaf and hearing-impaired children and their families.



Countries of member groups: Austria, Belgium (2), Bulgaria, Czech Republic, Denmark, Estonia, Finland, France, Germany (2), Ireland, Italy, Lithuania, Luxembourg, Netherlands, Poland, Portugal, Spain, Sweden.


Revenue


European Federation of Parents of Hearing-Impaired Children(FEPEDA) http://www.fepeda.net

Children


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La Commanderie2 Rue de l’Orient10140 AmanceFrance

T: +33-6-77-08-28-47

F: +33-1-40-47-03-53


Main contact: Colette Pradelle




Key activities: Represents the interests of patients who want to use anthroposophic medicine together with (or instead of) other medical treatments. Lobbies European, international and national institutions with the aim of improving the affordability and availability of anthroposophic medicine and its products and services.

Objectives for 2012 onwards: “EFPAM wishes to see an increased availability of anthroposophic remedies throughout the European Union, and any existing legal impediments removed.”



Countries of member groups: Austria, Belgium, Denmark, Finland, France, Germany, Iceland, Italy, Netherlands, Norway, Romania, Spain, Sweden, Switzerland, UK.

Groups to which organisation is affi liated: European Public Health Alliance (EPHA); International Coordination of Anthroposophic Medicine (IKAM); corresponding member of the European Coalition on Homeopathic and Anthroposophic Medicinal Products (ECHAMP).

Revenue



Main sources of funding: Membership fees; sponsorship.

European Federation of Patients’ Associations for Anthroposophic Medicine(EFPAM) http://www.efpam.eu

Alternative and Complementary Medicines


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Kimwierde 4201353 ez AlmereNetherlands

T: +31-365-313-052


Main contact: Ronan Farrelly




Key activities: Umbrella organisation that functions as an ambassador and negotiator for psoriasis patient associations in Europe. Actions are directed particularly at supra-national-level health authorities and related organisations, and at health professionals, associations and companies, as well as the media. Raises awareness of the psycho-social, medical, and fi nancial needs of psoriasis patients.

Key campaigns: Supports ‘World Psoriasis Day’ (every October).

Objectives for 2012 onwards: “EUROPSO will be working to get a stronger position for psoriasis patients.”



Countries of member groups: Belgium, Bulgaria, Czech Republic, Denmark, Estonia, Finland, France, Germany, Iceland, Ireland, Netherlands, Norway, Poland, Portugal, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey.

Groups to which organisation is affi liated: International Federation of Psoriasis Associations (IFPA).

Revenue

Pharmaceutical funding: 2010: Janssen-Cilag; Schering-Plough.


European Federation of Psoriasis Associations(EUROPSO)http://www.europso.eu

Skin


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354 rue de Neudorf2222 Luxemburg

T: +352-2643-2121

F: +352-2643-2243


Main contact: Jeannot Mersch


Name of representative in Brussels: Jeannot Mersch





Key activities: Federation of national European associations of road traffi c victims (including the families of people killed or disabled). Aims to increase awareness at European level of the scale of road traffi c accidents, and to stress the importance of measures and changes of behaviour that could reduce accidents. Works for the prevention of crashes, and strengthens contacts and collaboration between road victim associations.

Key campaigns: Issued an action plan for the ‘UN Decade of Action (DOA) for Road Safety 2011-2020’. Promotes ‘World Day of Remembrance for Road Traffi c Victims’ (every November). Participated in the WHO May 2009 ‘NGO Brussels Declaration’, which offers 33 recommendations to improve road safety.

Objectives for 2012 onwards: “FEVR would like to see road crash victims treated similarly to the victims of crime and violence.”



Countries of member groups: Belgium (2), Croatia, France, Greece (2), Ireland, Italy (2), Luxembourg, Netherlands (2), Poland, Portugal, Romania, Slovenia, Spain, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: United Nations Road Safety Collaboration.

Revenue


Main sources of funding: 2010, according to the Register of the European Transparency Initiative (ETI): partner/sponsor donations (€2,000); membership fees (€3,300).

European Federation of Road Traffi c Victims(FEVR)http://www.fevr.org

Disability / Public Health


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Avenue Père Damien 761150 BrusselsBelgium


Main contact: Marielle Helleputte Position of main contact: Secretary GeneralName of representative in Brussels: Marielle HelleputtePosition of representative in Brussels: Secretary GeneralContact for representative in Brussels: [email protected]



Key activities: Umbrella organisation of national or regional associations of people caring for dependent relatives. Represents and defends at EU level the interests of individuals who choose to prioritise the care of their children, or their older or disabled relatives.

Key campaigns: Campaigning for ‘2012 European Year for Active Ageing and Intergenerational Solidarity’.

Objectives for 2012 onwards: “Lobbying will focus around themes that are not new, but still relevant, including: recognition of unpaid family work (the caring); the status of carers; equal opportunities; leave to reconcile work and family life; and the role of civil society in the workings of the EU.”


Number of member groups: 20 national associations and federations from 15 European countries.

Countries of member groups: Austria, Belgium (3), France, Germany, Hungary, Ireland, Italy (2), Luxembourg, Poland, Romania, Slovakia (2), Spain (2), Sweden, Switzerland, UK.

Groups to which organisation is affi liated: European Women’s Lobby (EWL); Platform of European Social NGOs (Social Platform).

European Federation of Unpaid Parents and Carers at Home(FEFAF) http://www.fefaf.be

Carers


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Wuermanger 585757 KarlsfeldGermany

T: +49-(0)81-31-90-85-59

F: +49-(0)81-31-61-43-11


Main contact: Silke Mader

Position of main contact: Chairwoman of the Executive Board



Key activities: Pan-European organisation representing the interests of pre-term infants and their families. Gathers together parents and medical professionals from different disciplines, with the common goal of improving the long-term health of newborn infants by ensuring the best possible prevention, treatment, care and support.

Key campaigns: ‘Jeder Tag Zählt’ [‘Every Day Counts’]. ‘Ene, Mene, Mini’, a German webportal. ‘Too Little, Too Late? Why Europe should do more for preterm infants’, a European benchmarking report. Participates in ‘International Prematurity Awareness Day’ (every November).

Objectives for 2012 onwards: “About one-in-ten babies (half a million) are born prematurely each year in Europe, and the number is increasing. EFCNI unites the voices for newborn infants across Europe, and proposes a vision of every child born healthy and receiving the best possible care.”


Number of member groups: 40 from 23 European countries.

Countries of member groups: Austria, Belgium, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Ireland, Italy, Lithuania, Netherlands, Norway, Poland, Portugal, Serbia, Spain, Sweden, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: Ausbildungszentrum für Laktation und Stillen (IBCLC); Ausgezeichnete Patientenversorgung; Council of International Neonatal Nurses (COINN); EuroNeoNet/EuroNeoStat; European Critical Care Foundation (ECCF); European Society for Neonatology (ESN); German Neonatal Network (GNN); Gesellschaft für Neonatologie und Pädiatrische Intensivmedizin (GNPI); IPOKRaTES; Neobrain; Union of European Neonatal and Perinatal Societies (UENPS).

Revenue

Pharmaceutical funding: Abbott supported EFCNI national parents’ organisations in celebrating ‘International Prematurity Awareness Day 2010’. Ferring Arzneimittel GmbH supported EFCNI’s German initiative ‘Jeder Tag Zählt’.

European Foundation for the Care of Newborn Infants(EFCNI) http://www.efcni.org

Children / Families and Health


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c/o Jeroen and Maaike van KempenZandoogjelaan 45691 RJ SonNetherlands

T: +31-499-477-509

F: +31-499-464-383


Main contact: Maaike van Kempen




Key activities: Support group for people with the very rare metabolic disease galactosaemia. Shares information, promotes awareness, and encourages European research into the disease. Lobbies for better disclosure in the labelling of foods and pharmaceuticals, and for changes in European law which affect the galactosaemic patient.



Countries of member groups: Austria, Belgium, Denmark, Estonia, France, Germany, Ireland, Italy, Netherlands, Norway, Spain, Switzerland, UK.


European Galactosaemia Society(EGS)http://www.galactosaemia.com



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c/o Gauchers Association3 Bull PitchDursleyGloucestershire, GL11 4NGUK

T: +44-1453-549-231


Main contact: Jeremy Manuel

Position of main contact: Chairman



Key activities: Alliance of Gaucher disease patient groups throughout Europe. Represents the interests of Gaucher patients to European and international organisations, facilitates the activities of the European Working Group on Gaucher Disease (EWGGD), and provides information and encouragement to groups of individuals representing Gaucher patients throughout Europe.



Countries of member groups: Austria, Bulgaria, France, Germany, Italy, Netherlands, UK.

Groups to which organisation is affi liated: European Working Group on Gaucher Disease (EWGGD).

European Gaucher Alliance(EGA)http://www.eurogaucher.org



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85

Galerie AgoraRue du Marché aux herbes 105 B 141000 BrusselsBelgium

T: +32-2-521-11-50

F: +32-2-520-68-66


Main contact: Jo Eerens


Name of representative in Brussels: Chief Executive Offi cer

Position of representative in Brussels: Jo Eerens

Contact for representative in Brussels: offi [email protected]



Key activities: Umbrella organisation for national haemophilia associations in Europe. Communicates with policymakers, the medical profession, patients and the public, to facilitate consultation, discussion and dissemination of information on issues related to bleeding disorders. The EHC mission is to improve the quality of life of people with haemophilia and other hereditary bleeding disorders in Europe.

Key campaigns: Supports ‘European Principles of Haemophilia Care’, ‘World Haemophilia Day (WHD)’ (every April), and ‘Rare Disease Day’ (every February).


Number of member groups: 36 national associations in 36 European countries.

Countries of member groups: Albania, Austria, Belgium, Bosnia, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: European Disability Forum (EDF); European Haemophilia Surveillance System (EUHASS); European Organisation for Rare Diseases (EURORDIS); Patients Network for Medical Research and Health (EGAN); partner of World Federation of Hemophilia (WFH).

Current affi liations with the EU: Member of the DG SANCO EU Committee of Experts on Rare Disease.

Revenue

Pharmaceutical funding: 2011: Baxter; Bayer; Biotest; CSL Behring; Inspiration Biopharmaceuticals; Pfi zer; Sanquin.


European Haemophilia Consortium(EHC)http://www.ehc.eu

Blood Disorders


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86

c/o Migraine Association of IrelandUnit 14, Block 5Port Tunnel Business ParkClonshaughDublin 17Ireland

T: +353-1-894-1280 / +353-1-894-1281

F: +353-1-802-2044


Main contact: Audrey Craven




Key activities: Patient umbrella group which represents patient groups from across Europe. Promotes awareness and understanding of migraine and other headache disorders. Voices the views of headache patients across Europe, and informs and infl uences policy makers about headache disorders.

Key campaigns: Organises ‘European Migraine Day of Action (EMDA)’ (every September). EHA ‘Madrid Manifesto on Migraine and Headache Disorders’.



Countries of member groups: Austria, Belgium, Denmark, Finland, Germany, Iceland, Ireland, Italy (2), Luxembourg, Netherlands, Norway, Serbia, Spain, Sweden, Switzerland, UK (2).

Groups to which organisation is affi liated: European Federation of Neurological Associations (EFNA).


Revenue

Most recent yearly revenue: Approximately €125,000 (2010), according to GSK.

Pharmaceutical funding: GSK points out that its 2010 grant of €15,000 represented 12% of the organisation’s revenue that year.


European Headache Alliance(EHA)http://www.e-h-a.eu



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87

BP 7 Anderlecht-Erasme1070 BrusselsBelgium

T: +43-676-420-34-66


Main contact: Arnulf Pohl

Position of main contact: Chairperson



Key activities: Provides patient support and information, raises awareness of organ donation, and advocates with European political institutions.

Key campaigns: ‘EHLTF Games’, a celebration of life, arranged bi-annually.

Objectives for 2012 onwards: “The EHLTF mission is to become the trusted, respected and authoritative voice representing all heart and lung transplant recipients throughout Europe.”



Countries of member groups: Austria, Belgium, Croatia, Denmark, Finland, France, Greece, Hungary, Ireland, Italy, Netherlands, Norway, Poland, Slovenia, Spain, Sweden, Switzerland, UK.


Revenue

Pharmaceutical funding: Astellas Pharma; Novartis.


European Heart and Lung Transplant Federation(EHLTF)http://www.ehltf.info



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88

Rue Montoyer 311000 BrusselsBelgium

T: +32-2-512-91-74

F: +32-2-503-35-25


Main contact: Susanne Løgstrup


Name of representative in Brussels: Susanne Løgstrup





Key activities: Alliance of heart foundations and other similar NGOs that play a leading role in the prevention and reduction of cardiovascular diseases through advocacy, networking, education, and patient support. Infl uences European policymakers in favour of a heart-healthy lifestyle, disseminates information, encourages research, and nurtures ties between groups concerned with the prevention of cardiovascular diseases.

Key campaigns: Member of the consortium of the ‘Tobacco-Free Europe’ campaign.

Objectives for 2012 onwards: “The ‘EuroHeart II’ project in which EHN partners aims to provide outputs that can be used to develop community initiatives to promote cardiovascular health.”

Current EU-funded projects: Partner in two projects: ‘EuroHeart II’, 2011-2014, funded by the DG SANCO 2nd EU Public Health Programme 2008-2013; and ‘TobTaxy (Making Tobacco Tax Trendy)’, 2010-2013, funded by the Health Programme 2008-2013 of the Executive Agency for Health and Consumers (EAHC).



Countries of member groups: Austria, Belgium, Bosnia, Cyprus, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy (4), Lithuania, Netherlands (2), Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden (2), Switzerland, Turkey, UK (3).

Groups to which organisation is affi liated: European Public Health Alliance (EPHA); World Heart Federation (WHF); World Hypertension League (WHL); partner in the Smoke-Free Partnership (SFP).

Current affi liations with the EU: Member of the DG SANCO EU Health Policy Forum (EUHPF). Involved in the activities of the European Medicines Agency (EMA).

Revenue


Pharmaceutical funding: No pharma funding, except as a member of the ‘Tobacco-Free Europe’ campaign, to which Johnson & Johnson, Novartis, and Pfi zer supply unrestricted educational grants.

Main sources of funding: 2010, according to the Register of the European Transparency Initiative (ETI): core funding from member organisations (€479,000); donations (€124,000); European Commission (€24,000).

European Heart Network(EHN)http://www.ehnheart.org



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89

c/o Department of NeurologyUniversitätsklinikum UlmOberer Eselsberg 45/189081 UlmGermany

T: +49-731-500-63-101

F: +49-731-500-63-082


Main contact: G. Bernhard Landwehrmeyer

Position of main contact: Speaker of the European HD Network



Key activities: Provides a platform for Huntington’s disease (HD) professionals and patients (and their families) to work together towards a treatment for HD. Currently building a registry of clinical data and biosamples throughout Europe for HD research and development.


Number of member groups: No member groups; individual members from 21 European countries.

Countries of member groups: Austria, Belgium, Czech Republic, Denmark, Finland, France, Germany, Ireland, Italy, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovenia, Spain, Sweden, Switzerland, Turkey, UK.

Revenue

Main sources of funding: High-Q Foundation.

European Huntington’s Disease Network(EHDN)http://www.euro-hd.net



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90

33 Pearse StreetDublin 2Ireland

T: +353-1-671-5691

F: +353-1-671-5662


Main contact: Peggy Maguire




Key activities: Established to ensure that women’s health issues are on the European agenda. Working to make the health and wellbeing of women and the family a priority for the European Commission and all EU Member States. Disseminates the results of European research on women’s health issues, and promotes gender equity in health treatment and care.

Key campaigns: Supports ‘European Week Against Cancer’ (every May).

Current EU-funded projects: Partner in ‘Engender’, 2009-2011, partly funded by the Executive Agency for Health and Consumers (EAHC).


Number of member groups: No member organisations, but supported by a European Advisory Council (EAC) composed of organisations and individuals from across Europe with diverse expertise in women’s health.

Groups to which organisation is affi liated: Health First Europe (HFE).


Revenue

Most recent yearly revenue: Approximately €142,000 (2010), according to GSK.

Pharmaceutical funding: GSK points out that its 2010 grant of €20,000 represented 14% of the organisation’s revenue that year.


European Institute of Women’s Health(EIWH)http://www.eurohealth.ie

Gender Health


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91

9-13 Rue d’Idalie1050 BrusselsBelgium

T: +32-2-639-62-30


Main contact: Anna Rouillard

Position of main contact: Permanent Brussels Representative

Name of representative in Brussels: Anna Rouillard

Position of representative in Brussels: Permanent Brussels Representative




Key activities: Alliance of not-for-profi t organisations representing key stakeholders in kidney health issues in Europe. Takes a multidisciplinary approach, involving patients and families, doctors, nurses, researchers, and other healthcare professionals. Believes that the issue of kidney health and disease must be considered at European level.

Key campaigns: Supports ‘World Kidney Day’ (every March).

Objectives for 2012 onwards: “The European Council’s 2010 ‘Innovative approaches for chronic diseases in public health and healthcare systems’ calls on the EU to consult with stakeholders to identify options to prevent chronic diseases. As a contributor to the debate, EKHA is looking forward to the process.”


Number of member groups: 7 pan-European, international or national bodies (one is a patient group).

European Kidney Health Alliance(EKHA)http://www.ekha.eu

Renal


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92

c/o the Irish Kidney AssociationDonor House, Block 43AParkwestDublin 12Ireland

T: +353-1-6205-306

F: +353-1-6205-366


Main contact: Nadine Stohler




Key activities: European umbrella organisation for national kidney patients’ organisations in Europe, founded by kidney patients as the voice of European kidney patients. Aims to place renal disease onto the EU public-health agenda. Promotes the well-being, treatment, and living conditions of kidney patients.

Key campaigns: Takes part in ‘European Day for Organ Donation and Transplantation’ (every October). Members participate in ‘World Kidney Day’ (every March).


Number of member groups: 21 national kidney patients’ associations from 21 European countries.

Countries of member groups: Austria, Croatia, Denmark, Estonia, Finland, France, Germany, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Netherlands, Norway, Poland, Portugal, Slovenia, Sweden, Switzerland, UK.

Groups to which organisation is affi liated: European Disability Forum (EDF); European Kidney Health Alliance (EKHA); European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); International Alliance of Patients’ Organisation (IAPO); International Federation of Kidney Foundations (IFKF).

Revenue

Pharmaceutical funding: Amgen.


European Kidney Patients’ Federation(CEAPIR)http://www.ceapir.eu

Renal


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93

Seestrasse 2408802 KilchbergZürichSwitzerland

T: +41-44-716-30-30

F: +41-44-716-30-39


Main contact: Heinz Marchesi


Name of representative in Brussels: Sören Haar

Position of representative in Brussels: Head of EULAR Brussels EU Offi ce




Key activities: Umbrella organisation representing Europe’s rheumatology patients, health professionals and scientifi c societies. The national organisations of people with arthritis/rheumatism across Europe work together via the EULAR Standing Committee of People with Arthritis/Rheumatism in Europe (PARE).

Key campaigns: Plays a major role in ‘Alliance Against Arthritis Action Day (AAA)’ (every March). Participates in ‘World Arthritis Day (WAD)’ (every October).

Objectives for 2012 onwards: “EULAR has eight 2012 objectives, including: strengthened activities in currently less-prioritised areas (such as non-infl ammatory and orphan diseases); musculoskeletal diseases to be recognised as a priority major-disease area; and increased international partnerships for EULAR.”

Current EU-funded projects: Partner in ‘European Musculoskeletal Conditions Surveillance and Information Network (Eumusc.net)’, 2010-2013, funded by the Executive Agency for Health and Consumers (EAHC).


Number of member groups: 35 patient associations from 34 European countries.

Countries of member groups: Austria, Belgium (2), Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Macedonia, Malta, Montenegro, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: International League of Associations for Rheumatology (ILAR).

Current affi liations with the EU: Participates in the DG SANCO Task Force of Major and Chronic Diseases (TFMCD).

Revenue

Pharmaceutical funding: 2011 corporate fee-paying members of EULAR: Abbott Laboratories SA; Actelion Pharmaceuticals Ltd; Amgen (Europe) GmbH; AstraZeneca; Bioibérica SA; Bristol-Myers Squibb UPSA; Helsinn Healthcare SA; HGS International S.a.r.l; Hoffmann-La Roche Ltd; IBSA Institut Biochimique SA; Laboratoires Expanscience; Lilly; medac GmbH; Merck & Co., Inc; Mundipharma International Ltd; Negma-Lerads; NicOx SA; Novartis Pharma AG; Novo Nordisk A/S; Pfi zer Pharmaceutical Group; Pierre Fabre Médicament; Rottapharm Madaus GmbH; Sanofi Aventis Groupe; Servier International; TRB Chemedica International SA; UCB Pharma SA.

Main sources of funding: Pharmaceutical companies; medical device companies; scientifi c societies.

European League Against Rheumatism(EULAR)http://www.eular.org

Rheumatic and Musculoskeletal Diseases


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94

31 Grosvenor RoadJesmondNewcastle-upon-TyneNE2 2RLUK

T: +44-191-281-8003

F: +44-191-281-8003


Main contact: Edwin Farr




Key activities: Umbrella group for national stuttering associations in Europe. Aims to exchange information and experiences, represent the interests of stutterers with relevant political and professional bodies, and promote self-help.

Key campaigns: Supports ‘International Stuttering Awareness Day (ISAD)’ (every October).

Objectives for 2012 onwards: “Initial priorities include building a database on stuttering, encouraging an integrated approach to stuttering therapy, and promoting research and the exchange of ideas _ plus capitalising on the the popularity of the fi lm, ‘The King’s Speech’, to raise awareness of stuttering.”



Countries of member groups: Austria, Belgium (2), Bulgaria, Croatia, Denmark, Estonia, Finland, France (2), Germany, Iceland, Ireland, Italy, Latvia, Lithuania, Netherlands, Poland, Serbia, Slovenia, Spain (2), Sweden, Switzerland, UK.

Groups to which organisation is affi liated: European Disability Forum (EDF); International Stuttering Association (ISA).

Revenue

Most recent yearly revenue: £14,000/approximately €16,000 (2009-2010), according to the Charity Commission.

Main sources of funding: European Commission.

European League of Stuttering Associations(ELSA)http://www.stuttering.ws

Disability


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95

F. De Renesselaan 573800 Sint-TruidenBelgium

T: +49-(0)-2225-18476 [President]


Main contact: Tatjana Reic




Key activities: Association of liver patient groups from European countries. Aims to promote the interests of people with liver disease, monitor hepatitis and other liver disorders, publicise awareness and prevention, and raise the relatively-low profi le of liver disease (compared with other areas of medicine, such as heart disease).

Key campaigns: ELPA’s ‘Call to Action to Tackle Viral Hepatitis B and C’. Supports ‘World Hepatitis Day’ (every May).

Objectives for 2012 onwards: “The 2011 ELPA workshop, ‘Fighting the Shadow—Hepatitis C and Mental Health’, was the fi rst step towards proposed European guidelines for hepatitis C and mental health.”



Countries of member groups: Austria, Belgium (2), Bosnia, Bulgaria, Croatia, Germany (2), Italy, Netherlands, Poland, Portugal, Romania, Slovakia, Spain (2), Sweden, UK (2).

Revenue


Pharmaceutical funding: 2009: unrestricted grants from Bristol-Myers Squibb; Gilead; Novartis; Roche; and Tibotec.

Main sources of funding: 2009: pharmaceutical companies (€316,000); membership fees (€1,000).

European Liver Patients Association(ELPA)http://www.elpa-info.org

Liver Disease


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96

442 Glossop RoadSheffi eldS10 2PXUK

T: +44-114-267-2875


Main contact: Pippa Powell

Position of main contact: Manager


Geographic areas of operation: All of Europe (including European countries outside the EU).

Key activities: European foundation dedicated to lung diseases. Brings together patients, the public and respiratory professionals to infl uence respiratory medicine. Works with patient organisations across Europe to involve people with lung diseases at every level of research, and listens to their needs, to ensure that their voice can be heard by health professionals and politicians.

Current EU-funded projects: Partner in two projects: ‘Airway Disease Predicting Outcomes through Patient Specifi c Computational Modelling (AirPROM)’, 2011-2016, funded by the 7th Framework Programme; and ‘Unbiased BIOmarkers in PREDiction of respiratory disease outcomes (U-BIOPRED)’, 2008-2013, partly funded by the 7th Framework Programme.


Groups to which organisation is affi liated: European Respiratory Society (ERS).

Revenue

Pharmaceutical funding: None, bar funding by Boehringer Ingelheim of the annual lung-function testing event at the European Respiratory Society Congress.

Main sources of funding: European Respiratory Society (ERS); funding of factsheets by the Health and Environment Alliance (HEAL).

European Lung Foundation(ELF)http://www.european-lung-foundation.org

Respiratory


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97

Römerweg 44410 LiestalSwitzerland

T: +41-(0)6-921-91-89


Main contact: Béatrice Preston




Key activities: Coalition of national organisations for people affected by Marfan syndrome (or related disorders). Supports member organisations, and exchanges information about Marfan syndrome and living with this complex genetic disorder. Runs an annual EMSN Young Adults Meeting.



Countries of member groups: Austria, Belgium (2), Denmark, Finland, France, Germany, Netherlands, Norway, Slovakia, Spain, Sweden, Switzerland, UK.

Groups to which organisation is affi liated: International Federation of Marfan Syndrome Organizations (IFMSO).

Revenue


European Marfan Support Network(EMSN)http://www.marfan.eu andhttp://www.marfan.de/emsn



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98

Sønder Alle 5, st 3,9500 HobroDenmark

T: +44-(0)7759-349-743


Main contact: Richard Simpson




Key activities: Grouping of European organisations involved in supporting patients with myalgic encephalomyelitis (ME/CFS). Campaigns for biomedical research to provide treatments and cures for ME/CFS. Member groups work together to promote awareness of ME/CFS.

Key campaigns: ‘Burst Our Bubble’. Supports ‘International ME Awareness Month’ (every May).

Objectives for 2012 onwards: “EMEA will continue to work together on initiatives of benefi t to patients in Europe. We look forward to progressive developments in treatments, and hope that our continued lobbying will make the relevant authorities aware that only good science will prevail.”



Countries of member groups: Belgium, Denmark, Germany, Ireland, Italy, Netherlands, Norway, Spain, Sweden, Switzerland, UK.

European ME Alliance(EMEA)http://www.euro-me.org

Neurological


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99

Rue de l’Industrie 111000 BrusselsBelgium

T: +32-(0)-2-234-30-58

F: +32-(0)-2-230-33-00


Main contact: Dr Ian Banks


Name of representative in Brussels: Dr Ian Banks





Key activities: European membership association dedicated to the improvement of men’s health. As a platform for the collaboration of appropriate stakeholder groups in Europe, engages in awareness-raising campaigns, and actively contributes to European public health and social policy debates.

Key campaigns: Members play a key role in ‘International Men’s Health Week (IMHW)’ (every June).

Current EU-funded projects: Partner in ‘Engender’, 2009-2011, partly funded by the Executive Agency for Health and Consumers (EAHC).



Countries of member groups: Austria (2), Belgium, Denmark, Finland, France, Germany (3), Hungary (3), Ireland, Netherlands (2), Norway, Portugal, Slovakia, Sweden, Switzerland, UK (4).

Groups to which organisation is affi liated: European Federation of Pharmaceutical Industries and Associations (EFPIA); European Patients’ Forum (EPF); European Public Health Alliance (EPHA); GAMIAN Europe; International Society for Men’s Health and Gender (ISMH).

Revenue

Most recent yearly revenue: Approximately €98,000 (2010-2011).

Pharmaceutical funding: Bayer-Schering Pharma; European Federation of Pharmaceutical Industries and Associations (EFPIA); GSK; Novartis; Pfi zer; Roche Pharmaceuticals.

Main sources of funding: European Commission; pharmaceutical companies; membership fees.

European Men’s Health Forum(EMHF)http://www.emhf.org

Gender Health


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10

0

Rue Auguste Lambiotte 144/81030 BrusselsBelgium

T: +32-(0)-2-305-80-12

F: +32-(0)-2-305-80-11


Main contact: Christoph Thalheim


Name of representative in Brussels: Christoph Thalheim





Key activities: Umbrella organisation for multiple sclerosis societies from European countries. Represents the interests of the societies at European level, and works to achieve goals of high-quality, equitable treatment and support for people with MS throughout Europe. Acts as a focal point for liaison with the institutions of the EU and other European organisations.

Key campaigns: Supports ‘World MS Day’ (every May).

Objectives for 2012 onwards: “With huge disparities in multiple sclerosis care across Europe, EMSP will stress that that European citizens and the public at large need to be accurately informed of the need for more and better therapies for MS.”

Current EU-funded projects: Partner in ‘European Register for Multiple Sclerosis (EUReMS)’, 2011-2014, funded by the Executive Agency for Health and Consumers (EAHC).


Number of member groups: 31 member societies in 31 European countries.

Countries of member groups: Austria, Belgium, Bosnia, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK.

Groups to which organisation is affi liated: European Citizen Action Service (ECAS); European Disability Forum (EDF); European Federation of Neurological Associations (EFNA); European Patients’ Forum (EPF).

Current affi liations with the EU: Member of the Patients and Consumers Working Party (PCWP) of the European Medicines Agency (EMA).

Revenue


Pharmaceutical funding: 2009: Almirall; Baxter; Bayer Schering Pharma; Biogen Idec; Genzyme; GSK; GW Pharmaceuticals; Merck Serono; Novartis; UCB. GSK points out that its 2010 donation of €25,000 represented just under 4% of the organisation’s revenue that year.

Main sources of funding: 2009: Pharmaceutical companies; medical device and testing companies; European Commission (€60,000).

European Multiple Sclerosis Platform(EMSP)http://www.ms-in-europe.org



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Via di S. Maria in Via Lata 3/316128 GenovaItaly

T: +39-001-382-252


Main contact: Ennio Palmesino

Position of main contact: Chair of the Board



Key activities: European network of groups supporting recovery from alcohol-related harm. Advances mutual help, collaborates with professionals, and complements and strengthens the work of other organisations promoting policies for alcohol-related harm reduction.

Objectives for 2012 onwards: “EMNA will aim to facilitate the exchange of experience and ideas for the benefi t of members. The biggest benefi t, it seems, is to learn from each other. EMNA hopes to infl uence EU policies, and to produce a ‘Self Help in Europe’ manifesto.”



Countries of member groups: Denmark, France (2), Germany (3), Hungary, Italy, Netherlands, Norway (2), Spain, Sweden (2).

European Mutual-Help Network for Alcohol-Related Problems(EMNA) http://www.emna.org

Addiction


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2

Laarbeeklaan 1011090 BrusselsBelgium

T: +32-(0)2-476-31-06

F: +32-(0)2-477-62-10

Email: emp-offi [email protected]

Main contact: Sonia Goossen

Position of main contact: Contact person

Name of representative in Brussels: Sonia Goossen

Position of representative in Brussels: Contact person at EMP offi ce

Contact for representative in Brussels: emp-offi [email protected]



Key activities: European umbrella organisation of myeloma patient support groups, run by patients and their relatives. Aims to make treatments and medication more accessible, to provide access to information on clinical trials, to stimulate research, and to collaborate with European myeloma patient organisations. Scheduled to merge with Myeloma Euronet (ME) at about the time of publication of this Directory.


Objectives for 2012 onwards: “EMP is moving towards involvement in the development of clinical trials, intensifying co-operation with academic and pharmaceutical industry researchers. EMP intends to escalate dialogue with regulatory bodies, and will continue advocating for access to, and reimbursement of, treatments.”



Countries of member groups: Austria, Belgium (3), Denmark, Germany (3), Netherlands, Portugal (2), Switzerland.

Groups to which organisation is affi liated: European Cancer Patient Coalition (ECPC); European Forum for Good Clinical Practice (EFGCP); European Organisation for Rare Diseases (EURORDIS).

Current affi liations with the EU: Involved in the following activities of the European Medicines Agency (EMA): Patient Observer in the Pharmacovigilance Working Party (PhVWP); represented in the Patient and Consumer Working Party (PCWP); and represented in the EudraCT/TIG/JOG working group.

Revenue


Pharmaceutical funding: 2010: Amgen (€10,000); Celgene (€17,000); Novartis (€10,000).

Main sources of funding: 2010: pharmacetical companies; Contactgroep Myeloom en Waldenström Patiënten (CMWP); Universiteits Ziekenhuis (UZ) Brussels.

European Myeloma Platform(EMP)http://www.emp-myeloma.eu

Cancer


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c/o Children’s Chronic Arthritis AssociationGround Floor, Amber GateCity Wall Road, Worcester, WR1 2AHUK

T: +44-(0)-1905-745-595

F: +44-(0)-1905-745-703


Main contact: Caroline Cox

Position of main contact: ENCA Secretary



Key activities: Informal network of parent support groups and national juvenile idiopathic arthritis (JIA) associations in Europe. Exchanges information, promotes common projects at European level, and creates informal networks and regular exchanges between associations.



Countries of member groups: Belgium, Denmark, France, Germany, Italy, Netherlands, Portugal, UK.

Revenue


European Network for Children with Arthritis(ENCA)http://www.enca.org

Rheumatic and Musculoskeletal Diseases


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4

Chaussee d’Ixelles 1441050 BrusselsBelgium


Main contact: Francis Grogna Position of main contact: Secretary GeneralName of representative in Brussels: Francis GrognaPosition of representative in Brussels: Secretary GeneralContact for representative in Brussels: [email protected]



Key activities: Network of member organisations active in the fi eld of tobacco control. Promotes greater coherence in smoking-prevention activities, and encourages the adoption of tobacco-control policies at national and European levels. Facilitates the activities of national coalitions and specialised smoking-prevention networks.

Key campaigns: ‘Declaration: Total Ban With No Exceptions’, a call to prioritise tobacco control. Member of the consortium of the ‘Tobacco-Free Europe’ campaign. Major contributor to ‘World No Tobacco Day’ (every May).

Objectives for 2012 onwards: “We call on European countries to prioritise tobacco control, and to implement the WHO Framework Convention on Tobacco Control (FCTC) throughout Europe by 2020. We continue to work towards our goal of achieving a fully smoke-free Europe by 2040.”

Current EU-funded projects: Partner in ‘TobTaxy (Making Tobacco Tax Trendy)’, 2010-2013, funded by the Health Programme 2008-2013 of the Executive Agency for Health and Consumers (EAHC).


Number of member groups: Over 500 members in 29 national member coalitions (not all patient groups; some are government bodies) from 29 European countries.

Countries of member groups: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK.



Revenue


Main sources of funding: 2009: European Commission (€173,000); membership fees (€123,000).

European Network for Smoking and Tobacco Prevention(ENSP) http://www.ensp.org

Public Health


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Zabel-Krueger-Damm 183 / Uilenspiegel13469 Berlin / BrusselsGermany

T: +49-30-8596-3706

F: +49-30-4039-8752


Main contact: Gabreilla Tanasan


Name of representative in Brussels: Rafaël Daem

Position of representative in Brussels: Deputy Chair




Key activities: Grassroots umbrella federation that aims to unify national organisations of (ex-)users and survivors of psychiatry across Europe. Provides direct representation of people who have received psychiatric services, exchanges opinions, views and experiences, and attempts to infl uence policy at European level.

Objectives for 2012 onwards: “ENUSP plans to continue ‘Advocacy Update’, providing a Europe_wide platform to mental health-service users and psychiatric survivors. We also want to ensure ENUSP representation at decision- and policy_making forums, and to establish ENUSP’s involvement in research and other projects.”


Number of member groups: 73 member organisations in 28 European countries.

Countries of member groups: Austria (3), Belgium (3), Bosnia, Bulgaria, Czech Republic (2), Denmark (2), Estonia (2), Finland (2), France (2), Germany (3), Greece (7), Hungary (2), Iceland, Ireland (3), Italy (4), Latvia, Lithuania (3), Netherlands (2), Norway (4), Poland, Portugal (3), Romania (2), Slovakia, Slovenia (7), Spain, Sweden (2), Switzerland (2), UK (8).

Groups to which organisation is affi liated: European Disability Forum (EDF); European Patients’ Forum (EPF); International Disability Caucus (IDC); World Network of Users and Survivors of Psychiatry (WNUSP).

Revenue



Main sources of funding: 2010: Membership fees (under €1,000); European Commission (€6,000); donations (€6,000).

European Network of (Ex-) Users and Survivors of Psychiatry(ENUSP) http://www.enusp.org

Mental Health


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Postbus2 Centraal StationKeizerinlaan 31000 BrusselsBelgium

T: +31-63-40-82-137


Main contact: Robert Boelhouwer


Name of representative in Brussels: Marisol Morales

Position of representative in Brussels: Member, Political Affairs




Key activities: Network of patient associations and support groups functioning in close consultation with national associations. Aims to ensure greater awareness of fi bromyalgia among Europe’s politicians, health professionals, scientists, and general public.

Key campaigns: Supports ‘European Week Against Pain (EWAP)’ (every October).

Objectives for 2012 onwards: “We are working towards establishing a Pain Alliance Europe (PAE).”



Countries of member groups: Belgium (2), Denmark, France, Germany, Italy, Netherlands, Portugal, Slovenia, Spain, Sweden (2), UK.


Current affi liations with the EU: Participates in the European Medicines Agency (EMA) Patient and Consumer Working Party (PCWP), and in the EMA HealthCare Professionals Working Group (HCPWG).

Revenue


Pharmaceutical funding: 2009: Pfi zer (€25,000). 2010: UCB (€1,000).

Main sources of funding: 2009: pharmaceutical companies; membership fees (€2,000).

European Network of Fibromyalgia Associations(ENFA)http://www.enfa-europe.eu



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Gran Vía Marqués del Turia, 49-7º,12ª46005 ValenciaSpain

T: +34-96-325-54-57

F: +34-96-325-54-59


Main contact: Jamie Bolling




Key activities: Cross-disability organisation and network spreading the concept of independent living in EU Member States and neighbouring European countries, and advocating for the implementation of the ‘UN Convention on the Rights of Persons with Disabilities (CRPD)’. Promotes community services, and increases the sharing of information, experiences and insights among people with a disability.

Key campaigns: Runs the ‘Strasbourg Freedom Drive’ (every second September). Supports the European Disability Forum’s ‘Freedom of Movement’. Supports the European Commission’s ‘Your Passenger Rights at Hand’. Supports ‘World Autism Awareness Day’ (every April).



Countries of member groups: Albania, Austria, Belgium, Bulgaria (2), Cyprus, Finland, France (2), Germany (4), Greece (2), Ireland, Italy (4), Latvia, Montenegro, Norway (2), Slovenia, Serbia, Spain, Sweden (3), Switzerland, UK (5).


Revenue


Main sources of funding: European Commission; Social Welfare Government of Valencia.

European Network on Independent Living(ENIL)http://www.enil.eu

Disability


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8

Lt. Gen. Van Heutzslaan 63743 JN BaarnNetherlands

T: +31-(0)35-54-80-481

F: +31-(0)35-54-80-499


Main contact: Annette Boersen

Position of main contact: Research Manager



Key activities: International research support organisation for neuromuscular disorders. Aims to facilitate communication between scientists and clinicians working in the fi eld of neuromuscular diseases. Runs a clinical trial network, forums, and holds about eight workshops a year. Has patient organisations as members and partner organisations.

Objectives for 2012 onwards: “The neuromuscular community is dynamic. Major achievements are being made or expected for the near future. We are increasing the patient platform and patient communication activities through a webforum, newsletters, and meetings.”


Number of member groups: 9 member patient organisations from 8 European countries.

Countries of member groups: Denmark, France, Germany, Italy, Netherlands (2), Slovenia, Switzerland, UK.

Revenue


Pharmaceutical funding: 2010: Genzyme Europe B.V; GSK (€5,000).

Main sources of funding: 2011: member organisations (€180,000); foundations (including the Dutch ALS Foundation, the Dutch FSHD Foundation, and the Jain Foundation); pharmaceutical companies.

European Neuro Muscular Centre(ENMC)http://www.enmc.org



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c/o Deutsche ILCO e.V.Thomas Mann Straße 4053111 BonnGermany

T: +49-(0)-228-338-894-50

F: +49-(0)-228-338-894-75


Main contact: Ria Smeijers




Key activities: Association of associations for ostomates from all over Europe. Run by ostomates, and represents their viewpoints at European level. Helps national ostomy associations get the EOA ‘Charter of Ostomates’ Rights’ implemented and accepted by the authorities in European countries.

Key campaigns: Supports ‘World Ostomy Day (WOD)’ (every September).

Objectives for 2012 onwards: “Ostomates can make a difference. By co-operating on a national and international level, not restricted by any boundaries, we can use our infl uence (more than we imagine) to increase the care for ostomates.”


Number of member groups: 31 member organisations in 29 European countries (plus others in non-European countries).

Countries of member groups: Austria, Belgium, Bosnia, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Hungary, Iceland, Italy (2), Latvia, Lithuania, Luxembourg, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK (2).

Groups to which organisation is affi liated: International Ostomy Association (IOA).

Revenue


European Ostomy Association(EOA)http://www.ostomyeurope.org

Gastrointestinal


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1 Northumberland AvenueTrafalgar SquareLondonWC2N 5BWUK

T: +44-(0)207-872-5510

F: +44-(0)207-872-5611


Main contact: Lizzie Graham




Key activities: European umbrella organisation for Parkinson’s disease. Seeks to raise awareness of, and reduce inequalities in, the treatment and management of Parkinson’s disease across Europe. Aims to help people with Parkinson’s live a full life, and supports the search for a cure.

Key campaigns: ‘Life with Parkinson’s’ (parts 1 and 2). ‘Move for Change’, a three-year pan-European survey.

Objectives for 2012 onwards: “By working with member organisations, the EPDA aims to ensure equal access to good-quality Parkinson’s care across Europe. The EPDA will promote a constructive dialogue between science and society (improving education and awareness), and encourage national Parkinson’s organisations in Europe.”

Current EU-funded projects: Partner in ‘Restorative Plasticity at Corticostriatal Excitatory Synapses (REPLACES)’, 2008-2012, funded by the 7th Framework Programme.


Number of member groups: 40 patient associations in 31 European countries.

Countries of member groups: Austria, Belgium (2), Bulgaria, Croatia, Cyprus, Czech Republic, Denmark (2), Estonia, Finland, France (2), Germany, Greece (2), Hungary, Iceland, Ireland, Italy (2), Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland (4), Portugal, Romania, Serbia, Slovenia, Spain, Sweden (2), Switzerland, Turkey, UK.

Groups to which organisation is affi liated: Association of Physiotherapists in Parkinson’s Disease Europe (APPDE); European Disability Forum (EDF); European Federation of Neurological Associations (EFNA).


Revenue


Pharmaceutical funding: 2010: Abbott; GSK; Lundbeck; Merck Serono; Norgine; Orion Pharma; TEVA; UCB. GSK points out that its 2010 donation of €30,000 represented 4.8% of the organisation’s revenue that year.

Main sources of funding: Pharmaceutical companies; grants; membership fees (approximately €21,000 per annum).

European Parkinson’s Disease Association(EPDA)http://www.epda.eu.com



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Calavariestraat 12B6211 NJ MaastrichtNetherlands

T: +31-(0)6-36-062-039


Main contact: Brigitte van der Zanden




Key activities: Collaboration of regional patient organisations that aims to give its members (and all European patients) a voice in Europe’s increasingly cross-border healthcare processes. Hopes to participate in the realisation of better conditions for cross-border and European-level care. Campaigns for the free movement of patients in the EU.


Number of member groups: 11 organisations (some patient groups) from 3 European countries.

Countries of member groups: Belgium, Germany (6), Netherlands (4).

European Patients Empowerment for Customised Solutions(EPECS) http://www.epecs.eu

General Healthcare


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2

Rue Belliard 651040 BrusselsBelgium

T: +32-2-280-23-34

F: +32-2-231-14-47


Main contact: Nicola Bedlington


Name of representative in Brussels: Kaisa Immonen-Charalambous

Position of representative in Brussels: Policy Offi cer




Key activities: Umbrella organisation that brings together chronic-disease-specifi c patient organisations operating at EU level, and national coalitions of patients organisations. Acts as a collective patients’ voice at EU level. Exchanges good practice and challenges bad practices in the following areas: patients’ rights; equitable access to treatment and care; and health-related quality of life.

Key campaigns: Runs the EPF Manifesto Campaign ‘150 Million Reasons to Act.’ Supports the European Commission Information Society’s ‘Telehealth’ Campaign.

Objectives for 2012 onwards: “We will continue advocacy in key areas, supported by projects and partnerships. We will launch a capacity-building programme, a Youth Strategy, and will campaign for patient involvement in the 2014-2020 EU Programming (particularly the Public Health Programme, Horizon 2020, and Structural Funds and Cohesion Policy).”

Current EU-funded projects: Lead partner in ‘Chain of Trust’, 2011-2012, funded by the Health Programme 2008-2013 of the Executive Agency for Health and Consumers (EAHC). On the Advisory Board of ‘Renewing Health (REgioNs of Europe WorkINg toGether for Health)’, 2010-2012, funded by the Information Communication Technologies Policy Support Programme (ICT-PSP), under the Competitiveness and Innovation Framework Programme (CIP). Partner in ‘Interquality’, 2010-2012, funded by the 7th Framework Programme.


Number of member groups: 51 member organisations from EU Member States. EPF members are pan-European disease-specifi c patients’ organisations and national coalitions of patients’ organisations.Countries of member groups: National organisations from: Bulgaria (2), Cyprus, Estonia, France, Hungary, Ireland, Italy, Latvia, Lithuania, Malta, Netherlands, Poland, Romania, Slovakia, Spain, UK.Current affi liations with the EU: Plays an active role in the DG SANCO Patient Safety and Quality of Care Working Group, and the DG SANCO EU Health Policy Forum (EUHPF). Member of the EUnetHTA Joint Action (JA) Stakeholder Forum. Sits on the DG Research and Innovation High-Level Advisory Group on Research. Sits on the Steering Group of the DG Enterprise and Industry Corporate Social Responsibility (CSR) initiative. Participates in the European Medicines Agency (EMA) Board, in its Working Group on Ethical Issues in Third Country Clinical Trials, and in its Patients’ and Consumers’ Working Party (PCWP).RevenueMost recent yearly revenue: €676,000 (2010).Pharmaceutical funding: 2010: Amgen (€35,000); AstraZeneca (€75,000); Baxter (€15,000); CSL Behring (€10,000); Eli Lilly (€25,000); GSK (€70,000); Hoffmann-La Roche (€20,000); Johnson & Johnson (€20,000); MSD (€30,000); Novartis (€80,000); Pasteur Sanofi (€10,000); Pfi zer (€80,000).Main sources of funding: 2010: pharmaceutical companies (€470,000); European Commission (€65,000); medical device companies and foundations (€56,000); membership fees (€8,000).

European Patients’ Forum(EPF)http://www.eu-patient.eu

General Healthcare


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4th fl oor21 rue Marie-Thérèse1000 Brussels, Belgium

T: +32-(0)2-503-13-07F: +32-(0)2-274-17-59Email: [email protected]

Main contact: Jacqueline Bowman-Busato Position of main contact: Executive DirectorName of representative in Brussels: Jacqueline Bowman-BusatoPosition of representative in Brussels: Executive DirectorContact for representative in Brussels: [email protected]



Key activities: Independent, not-for-profi t, partnership-led, multi-stakeholder think tank. Works in European health policy-making, providing members and the public with independent research, capacity-building, and knowledge exchange, with the aim of bridging the gap between innovation and improved public health outcomes.

Advanced Innovation Programmes inChronic Conditions Management. Objective is to build a workable, non-disease specifi c model for the management of Chronic ConditionsHealth Technology Assessment: Objective is to examine the question of “How can HTA agencies at national level consider societal benefi ts as an integral element of the HTA core model which positively contribute not only to the realisation of better health outcomes for EU citizens but also to a smart, sustainable economy?”Innovation in healthcare: Objective is to examine the question of “How can innovation in healthcare be optimised in such a way as to facilitate European citizens to become an integral part of the process toward creating solutions which provide new and incrementally improved products, services and processes, in order to

increase patient survival, societal participation and quality of life?”


Number of member groups: Equally weighted membership of over 50 organisations consisting of European umbrella patient organisation members, commercial enterprises and their related trade associations, academic science organisations

Countries of member groups: Pan-European

Groups to which organisation is affi liated: None

Offi cial on-going affi liations with the EU: Expert on Care & Cure towards DG SANCO and DG INFSO’s European Innovation Partnership (EIP) on Active and Healthy Ageing.

Revenue

Top sources of funding: Unrestricted funding from commercial enterprises and Innovative Medicines Initiative

European Platform for Patients’ Organisations, Science and Industry(EPPOSI) http://www.epposi.org

Scientifi c Research


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4

Walvisstraat 322018 AntwerpenBelgium

T: +32-3-288-7794


Main contact: Johan Bijttebier




Key activities: European umbrella organisation for national organisations that support people who have had polio, or who are coping with post-polio syndrome (PPS). Collects data on people with polio and PPS, encourages co-ordinated research into ways to improve their lives and treatment, and is producing a validated information bank of positive help for these people.

Key campaigns: Supports ‘World Polio Day’ (every October).

Objectives for 2012 onwards: “EPU aims to achieve awareness on post-polio issues in the health sector and social services, and to give medical and social professionals a possibility to exchange new research results. We will debate relevant topics on a professional level.”



Countries of member groups: Belgium (3), Denmark, Finland, France, Germany (3), Ireland, Italy, Netherlands, Norway, Spain (2), Sweden, Switzerland, UK.

Groups to which organisation is affi liated: European Federation of Neurological Associations (EFNA); European Organisation for Rare Diseases (EURORDIS); Fédération des Associations Européennes et Internationales établies en Belgique (FAIB).

Revenue


European Polio Union(EPU)http://www.europeanpolio.eu

Infectious


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5

Rue de Trèves 49-511040 BrusselsBelgium

T: +-32-2-230-30-56

F: +-32-2-233-38-80


Main contact: Monika Kosinska


Name of representative in Brussels: Monika Kosinska





Key activities: Member organisation of public health NGOs, patient groups, health professionals, and disease groups working to improve health and to strengthen the voice of public health in Europe. Aims to bring together the public health community to provide thought leadership and facilitate change, to build public health capacity, to deliver equitable solutions to European public health challenges, and to improve health and reduce health inequalities.

Key campaigns: EPHA ‘Health Equity Campaign’ (‘European Charter for Health Equity’).

Objectives for 2012 onwards: “During 2011-2015, EPHA aims to see improvements in health and healthy life years for the overall population, strengthened European health systems, and support for institutional and policy frameworks that promote health.”

Current EU-funded projects: Partner in two projects: ‘Engender’, 2009-2011, partly funded by the Executive Agency for Health and Consumers (EAHC); and ‘TobTaxy (Making Tobacco Tax Trendy)’, 2010-2013, funded by the Health Programme 2008-2013 of the Executive Agency for Health and Consumers (EAHC).



Countries of member groups: Albania, Austria,

Belgium (23), Bulgaria (3), Croatia (5), Cyprus (2), Finland, France (6), Germany (2), Ireland (2), Italy (2), Lithuania, Macedonia, Malta, Netherlands (3), Norway, Poland, Portugal, Romania, Serbia, Slovenia, Spain (3), Switzerland, Turkey, UK (11).

Groups to which organisation is affi liated: Civil Society Contact Group; Health and Environment Alliance (HEAL); Platform of European Social NGOs (Social Platform); ALTER-EU signatory.

Current affi liations with the EU: Member of the European Food Safety Authority (EFSA) Stakeholder Consultative Platform. Member of the European Medicines Agency (EMA) Patients’ and Consumers’ Working Party (PCWP). Attends the DG SANCO EU Platform for Action on Diet, Physical Activity and Health. Member of the following DG SANCO bodies: EU Health Policy Forum (EUHPF); European Alcohol and Health Forum; and the Stakeholder Dialogue Group. Member of the DG Enterprise and Industry High-Level Group on the Competitiveness of the Agro-Food Industry.

Revenue

Most recent yearly revenue: €1.11m (2010), according to the Register of the European Transparency Initiative (ETI).

Main sources of funding: 2010: DG SANCO (€681,000); Global Health Network (€175,000); membership fees (€69,000); AGRI (€47,000). 2011: Executive Agency for Health and Consumers (EAHC) (€549,000).

European Public Health Alliance(EPHA)http://www.epha.org

Public Health


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Avenida de Menendez Pelayo 75Bajo derecha 328007 MadridSpain

T: +34-91-501-9513

F: +34-91-501-9668


Main contact: Irem Hattat




Key activities: Umbrella organisation for patient support groups and helplines from across Europe that specialise in sexual health. Develops tools and guidelines for the establishment of a common action plan throughout Europe, communicates sufferers’ needs and expectations in scientifi c and public arenas, and lobbies for the benefi t of sufferers.

Key campaigns: Runs ‘European Sexual Awareness Event’ (ESAE) (every February). Supports the DG SANCO ‘Fight Against Fake Medicines’ campaign.

Objectives for 2012 onwards: “ESHA will focus on raising public awareness of the issues surrounding counterfeit medicines, and will campaign for the exclusion of counterfeit and substandard medicines from the supply chain.”


Number of member groups: 13 patient support groups in various European countries.

Groups to which organisation is affi liated: European Society for Sexual Medicine (ESSM).

Revenue

Pharmaceutical funding: 2010: Janssen-Cilag EMEA.

European Sexual Health Alliance(ESHA)http://www.essm.org/society/esha.html



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ESMHD offi ceC/Miguel Hernández, 1128150 Valdetorres de JaramaMadridSpain

T: +34-647-573-679


Main contact: Renata Sarmento




Key activities: NGO that promotes the positive mental health of deaf people in Europe. Facilitates networking and the exchange of personnel and expertise between countries (especially with its online discussion board). Convenes an international congress every three years, and a special interest group (SIG) meeting every year.

Objectives for 2012 onwards: “While those working with deaf people are becoming more aware of their special mental health needs, this vital aspect is still all too often misunderstood or neglected.”



Revenue

Main sources of funding: Congresses; membership fees.

European Society for Mental Health and Deafness(ESMHD)http://www.esmhd.org

Mental Health


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Wilhelm-Mellies-Straße 1032120 HiddenhausenGermany

T: +49-52-21-122-066F: +49-52-21-699-014Email: [email protected] / [email protected]

Main contact: Tobias Hagedorn Position of main contact: SecretaryName of representative in Brussels: Mrs. Natalija StosickiPosition of representative in Brussels: Coordination with European CommissionContact for representative in Brussels: [email protected]



Key activities: Umbrella organisation of representatives of people with PKU who have come together to improve the quality of life of people with PKU. Promotes the educational and social welfare of the European PKU community, and stimulates scientifi c and medical research in PKU. Disseminates information, organises meetings, and helps in the establishment of national PKU societies.


Number of member groups: 28 member patient associations from 27 European countries.

Countries of member groups: Austria, Belgium, Croatia, Czech Republic, Denmark, Estonia, Germany, Greece, Hungary, Iceland, Ireland, Italy (2), Latvia, Lithuania, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK.

Revenue

Pharmaceutical funding: 2011: Merck Serono.

Main sources of funding: Advertisements by specialist dietary products companies (Nutricia; Vitafl o); membership fees; sponsorship.

European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria(E.S.PKU) http://www.espku.org



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c/o Swiss Paraplegic AssociationKantonsstraße 406207 NottwilSwitzerland

T: +41-(0)41-939-54-03

F: +41-(0)41-939-54-39


Main contact: Jane Horsewell




Key activities: Pan-European network of organisations representing people living with a spinal-cord injury. Facilitates the exchange of information, experience and knowledge, and works to ensure that information is available to all people with a spinal-cord injury. Establishes and promotes best practice, and functions as a unifi ed voice in Europe, informing, representing and lobbying on behalf of members.



Countries of member groups: Albania, Austria, Belgium, Bosnia, Croatia, Czech Republic, Denmark, Finland, France, Germany, Ireland, Italy, Lithuania, Netherlands, Portugal, Romania, Slovenia, Spain, Sweden, Switzerland, Turkey, UK.

Revenue

Main sources of funding: Congress income; membership fees.

European Spinal Cord Injury Federation(ESCIF)http://www.escif.org

Disability


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Microbusiness Center 15Rue de la Loi-Wetstraat 261040 BrusselsBelgium

F: +32-2-280-34-39


Main contact: Mark Wheatley


Name of representative in Brussels: Mark Wheatley





Key activities: Represents the interests of deaf people at EU level. Aims to promote, advance, and protect the rights of, and opportunities for, deaf people in the EU. Works to establish EU-level dialogues, making sure that deaf issues are raised in consultation with national deaf associations’ members.

Key campaigns: Supports the 2010 ‘Brussels Declaration on Sign Languages in the European Union’.

Objectives for 2012 onwards: “EUD goals are: recognition of the right to use an indigenous sign language; empowerment through communication and information; and equality in education and employment. We recognise that much work remains to be done before these core EUD themes are adequately achieved.”

Current EU-funded projects: Partner in ‘SignSpeak’, 2009-2012, funded by the 7th Framework Programme.


Number of member groups: 33 member groups in 32 European countries.

Countries of member groups: Austria, Belgium (2), Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK.


Revenue



Main sources of funding: 2011, according to the Register of the European Transparency Initiative (ETI): European Commission (€216,000); membership fees (€54,000).

European Union of the Deaf(EUD)http://www.eud.eu

Disability


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Iepenlaan 105248 AK RosmalenNetherlands

T: +31-(0)73-52-17-643


Main contact: Marlies Oom




Key activities: Umbrella organisation of Waldenström macroglobulinemia (WM) patient support groups in Europe. Aims to represent the interests of WM patients at a European level, and to give WM patients a voice in policy and in the political issues of the European healthcare system. Focuses on inequality of available medication and treatment in the EU, support for more rare cancer research, and the development of national rare cancer plans.

Objectives for 2012 onwards: “The Network intends to recruit additional board members, enlarge the number of WM patient support groups in Europe, consolidate current networking and information activities, and look for funding possibilities.”


Number of member groups: No member groups, but affi liate groups from 11 European countries.

Countries of member groups: Belgium, Denmark, Finland, France, Germany, Greece, Ireland, Netherlands, Sweden, Switzerland, UK.

Groups to which organisation is affi liated: European Cancer Patient Coalition (ECPC); European Organisation for Rare Diseases (EURORDIS); Lymphoma Coalition (LC).

Revenue

Main sources of funding: 2011: Contact Myeloma and Waldenström Patients (CMWP) [Netherlands Organisation for Multiple Myeloma and Waldenström].

European Waldenström Macroglobulinemia Network(EWMnetwork) http://www.ewmnetwork.eu /http://www.waldenstrom.eu

Rare


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Currently headquartered in the UK

T: +44-7986-172-626


Main contact: Marie-Claire Price




Key activities: European youth network working on behalf of the sexual and reproductive rights of young people. Uses advocacy, training, and awareness raising to ensure that young people have the right to healthcare, the right to choose their own partner, have access to condoms, and are able to choose how many children they want.

Key campaigns: Partner in the ‘Commit: Put Youth at the Heart of Development’ campaign. Supports ‘World AIDS Day’ (every December).

Objectives for 2012 onwards: “After an incredible period of growth and possibility, YouAct will build upon the ‘UN International Year of Youth (IYY)’ with advocacy efforts that seek to ensure attainment of young people’s sexual and reproductive rights.”


Number of member groups: 18 advocates or representatives from 11 European countries.

Countries of member groups: Belgium, Bulgaria (2), Cyprus (2), Denmark, Ireland (2), Norway, Poland, Portugal, Sweden (3), Turkey, UK (3).

Revenue


Main sources of funding: Companies; NGOs; foundations.

European Youth Network on Sexual and Reproductive Rights(YouAct) http://www.youact.org

Reproductive and sexual health / Young people


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c/o AIGS84 Rue Saint-Lambert4040 HerstalBelgium

T: +32-4-228-89-81

F: +32-4-227-73-65


Main contact: Marc Garcet




Key activities: Develops inter-institutional European exchange in the fi eld of social, professional, and economic rehabilitation of people with a mental health diffi culty. Uses forums, seminars and study visits to promote the meeting of institutions and professionals in the fi eld of rehabilitation with users of services.


Number of member groups: Member groups and individuals in 11 European countries.

Countries of member groups: Austria, Belgium, France, Germany, Greece, Netherlands, Poland, Portugal, Slovenia, Spain, UK.

Groups to which organisation is affi liated: European Disability Forum (EDF). Mental Health Europe (MHE).

Revenue

Main sources of funding: European Commission; membership fees.

Euro-Psy-Rehabilitation(Europsy)http://www.europsy.be

Mental Health


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c/o Plateforme Maladies Rares96 rue Didot75014 ParisFrance

T: +33-1-56-53-52-10

F: +33-1-56-53-52-15


Main contact: Yann le Cam


Name of representative in Brussels: Flaminia Macchia (Mrs)

Position of representative in Brussels: Director of European Public Affairs

Contact for representative in Brussels: fl [email protected]



Key activities: Represents rare disease organisations in European countries. Covers 4,000-plus distinct rare diseases, and acts as the voice of 30 million people affected by rare diseases throughout Europe. Aims to build a pan-European community of patient organisations and people living with rare diseases, and to fi ght against the impact of rare diseases on people’s lives.

Current EU-funded projects: Lead partner in ‘Patients’ Consensus on Preferred Policy Scenarii for Rare Disease’ (POLKA), 2008-2011, partly funded by the DG SANCO 2nd EU Health Programme 2008-2013.


Number of member groups: 469 member organisations (pan-European and national patient associations) from 41 countries.

Countries of member groups: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: European Patients’ Forum (EPF); International Association of Patient Organisations (IAPO).

Current affi liations with the EU: Member of the DG SANCO EU Committee of Experts on Rare Diseases. Member of the DG SANCO EU Health Policy Forum (EUHPF). Member of the European Medicines Agency (EMA) Scientifi c Committees. Member of the EUnetHTA Joint Action (JA) Stakeholder Forum.

Revenue


Pharmaceutical funding: 2009: Sigma Tau (€75,000); Novartis (€74,000); CSL Behring (€65,000); Celgene (€35,000); Shire (€23,000).

Main sources of funding: 2009: Association Française contre les Myopathies (AFM) Téléthon (28% of revenue); European Commission (27% of revenue); pharmaceutical companies (17% of revenue).

EURORDIS(European Organisation for Rare Diseases)http://www.eurordis.org



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9 Rue des Jardins4591 DifferdangeLuxembourg

T: +352-2040-1410

F: +352-2040-2303


Main contact: Jeannot Pesché




Key activities: Patient organisation that promotes research in Europe into all inner-ear diseases, with the aim of reducing the suffering of patients with tinnitus, morbus Ménières, and other hearing problems. Provides information, and runs an online forum. Founders are mostly tinnitus patients, and work for EuroTA as unpaid volunteers.

Key campaigns: ‘Mails to the World Health Organization’.


Number of member groups: 5 members in 3 European countries.

Countries of member groups: Belgium, France, Luxembourg.

Revenue


EuroTinnitus Association(EuroTA)http://www.eurotinnitus.com

Disability


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Alice Nahonlaan 79120 MelseleBelgium

T: +32-498-701-503 / +31-516-523-773

F: +32-3-775-48-39


Main contact: Lutgarde (Lut) De Baere


Name of representative in Brussels: Lutgarde (Lut) De Baere




Geographic areas of operation: Global, but mostly Europe.

Key activities: Organisation and network that collaborates with individual national Fabry patient organisations to improve the lives of Fabry patients (and their families and caregivers). Educates the public about Fabry disease, promotes best practice in the diagnosis and treatment of the condition, and helps establish national Fabry patient organisations. Provides an independent forum for Fabry patient organisations.

Key campaigns: Membership survey about the short supply of enzyme-replacement therapy (ERT).

Objectives for 2012 onwards: “FIN aims to be a global, independent network of Fabry patient associations, collaborating, communicating, and promoting best practice. FIN’s vision is a world in which every person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment and cure.”


Number of member groups: 20 member groups in 18 European countries.

Countries of member groups: Belgium, Bulgaria, Denmark, Finland, France, Germany (2), Ireland, Italy, Lithuania, Netherlands, Norway, Poland, Portugal, Slovakia, Spain (2), Sweden, Switzerland, UK.



Revenue


Pharmaceutical funding: 2010: Amicus Therapeutics (€3,000). 2011: Genzyme (€26,000); Shire (€20,000).

Main sources of funding: Interaction Institute for Social Change; pharmaceutical companies.

Fabry International Network(FIN)http://www.fabryintnetwork.com



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7

33 Rue Marcel Baudry7503 FroyennesBelgium

T: +32-20-8965-4094

Email: [email protected] ; [email protected]

Main contact: Ana Aja Pando




Key activities: Umbrella patient organisation linking scleroderma support groups throughout the EU. Acts as an informational clearing house for patients and the medical community, helping scleroderma organisations throughout Europe cross the barriers of language, differing medical and social systems, lack of awareness, and inaccessible medical information.

Key campaigns: Supports ‘International Scleroderma Day’ and ‘European Scleroderma Day’ (both every June), ‘Rare Disease Day’ (every February), and ‘Franco-Belgian Day of Scleroderma’ (every October).

Objectives for 2012 onwards: “FESCA is now working on developing its own Facebook page. Ultimately, we will educate the world, patients, and doctors about scleroderma.”



Countries of member groups: Belgium (2), Croatia, Cyprus, Denmark, France, Germany, Hungary, Ireland, Italy (4), Netherlands, Poland, Portugal, Spain, Switzerland, UK (2).


Federation of European Scleroderma Associations(FESCA)http://www.fesca-scleroderma.eu



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c/o Tervuursesteenweg 303001 HeverleeBelgium

T: +44-(0)1483-548-900


Main contact: Paul Pyck




Key activities: Formed by organisations around Europe that share the aim of improving the lives of people suffering from Williams syndrome (a disorder caused by an abnormality in chromosomes). Spreads awareness of this rare syndrome, and promotes scientifi c research projects. Runs annual summer camps for affected children.

Objectives for 2012 onwards: “All of the FEWS committee members are parents or carers of Williams people, and are dedicated to the common goal of bettering the lives of people with Williams syndrome.”



Countries of member groups: Belgium, France (2), Germany (2), Hungary, Ireland, Italy, Netherlands, Norway, Romania, Slovakia, Spain, Sweden, UK.


Revenue



Main sources of funding: Membership subscriptions; fundraising.

Federation of European Williams Syndrome Associations(FEWS) http://www.eurowilliams.org



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9

Rijsenbergstraat 1509000 GhentBelgium


Main contact: Claire Lewis-Jones




Key activities: Democratic association that aims to build a cross-border network among European patients and professionals on behalf of the one-in-six couples who need help to conceive and are facing obstacles. Exchanges information on best practise, educates in the fi eld of protection of reproductive health, and works to improve the rights of people affected by diffi culties in conceiving.

Key campaigns: Runs the ‘Special Families’ campaign.


Number of member groups: 25 full and associate member organisations from 22 European countries.

Countries of member groups: Austria, Belgium, Bulgaria (2), Croatia, Czech Republic, Finland, France (2), Germany, Greece, Hungary, Italy (2), Latvia, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Spain, Sweden, Switzerland, Turkey, UK.


Revenue

Main sources of funding: European Society of Human Reproduction and Embryology (ESHRE); membership fees.

Fertility Europe(FE)http://www.fertilityeurope.eu



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GAMIAN-Europe Secretariatc/o 424 St. Joseph High StreetSt. Venera SVR1013Malta

T: +32-49-452-7980


Main contact: Paul Arteel


Name of representative in Brussels: Paul Arteel





Key activities: Patient-driven pan-European organisation that represents the interests of people affected by mental illness, and advocates for their rights. Promotes information, education and awareness. Supports research projects on mental illness, and helps in the dissemination of results. Assists member organisations.

Key campaigns: Supports designating ‘2014 European Year of the Brain (EYoB)’.



Countries of member groups: Austria, Belgium (4), Croatia (3), Czech Republic (2), Denmark, Estonia, France (4), Greece (4), Hungary (4), Iceland, Ireland (3), Italy (6), Latvia (2), Lithuania (2), Malta, Netherlands (2), Norway, Poland (2), Portugal, Romania, Slovakia, Slovenia (2), Spain (4), Sweden (3), Turkey (2), UK (9).

Groups to which organisation is affi liated: European Brain Council (EBC); European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); International Alliance of Patients’ Organizations (IAPO).

Current affi liations with the EU: Involved in the activities of the European Medicines Agency (EMA). Co-chairs the DG SANCO Expert Platform on Depression. Provides the secretariat for the European Parliament Interest Group on Mental Health.

Revenue


Pharmaceutical funding: 2010: GSK; Lundbeck; Pfi zer Europe (each donating €25,000-€27,000).

Main sources of funding: Pharmaceutical companies; other donors; membership fees.

GAMIAN-Europe(Global Alliance of Mental Illness Advocacy Networks-Europe; GE)http://www.gamian.eu

Mental Health


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1

c/o Das Lebenhaus e.V.Usa-Straße 161231 Bad NauheimGermany

T: +49-6032-9492-881

F: +49-6032-9492-885



Position of main contact: European Co-ordinator


Geographic areas of operation: Worldwide (including Europe).

Key activities: Association of patient advocates and organisations that aims to provide information and support to GIST patients and their families, as well as raise GIST awareness. Offers assistance and materials in multiple languages to strengthen resources in a given region. Lists GIST experts and available clinical trials.

Key campaigns: ‘Crossing Borders to Unite Against GIST’.

Objectives for 2012 onwards: “Organisations in the GGN link member sites to its web pages, to share information about local resources (including clinical trials), and to support the access of GIST patients to treatment.”


Number of member groups: 13 member organisations from 14 European countries, plus 7 individuals acting as liaison in another 7 European countries.

Countries of member groups: Belgium, Czech Republic, Finland, France, Germany, Hungary, Italy, Netherlands, Norway, Poland, Romania, Spain, Switzerland, UK.

Groups to which organisation is affi liated: Association of Cancer Online Resources (ACOR); Das Lebenshaus.

Revenue

Most recent yearly revenue: The GGN notes that, as an informal network, it has no funding.


Main sources of funding: The two main founder organisations (Das Lebenshaus e.V.; Life Raft Group Association).

Global GIST Network(GGN)http://www.globalgist.org

Cancer / Gastrointestinal


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GLCC Secretariatc/o The Roy Castle Lung Cancer FoundationRothesay House134 Douglas StreetGlasgow G2 4HFScotland

T: +44-(0)141-331-4530


Main contact: Jesme Fox




Key activities: International voice of lung cancer patients, with a Europe-oriented membership. Promotes understanding of lung cancer, and raises awareness of the subject. Provides a forum for members to network, share ideas, and to learn from each others’ initiatives. Aims to effect change in legislative or regulatory policies to optimise treatment and care.



Countries of member groups: Bulgaria, Denmark, France, Germany, Ireland, Italy (3), Netherlands, Norway, Slovenia, Spain, Sweden, Switzerland, UK (4).

Revenue

Pharmaceutical funding: 2011: Boehringer Ingelheim; GSK; Pfi zer Oncology (each donating £30,000/approximately €33,000 or more).

Global Lung Cancer Coalition(GLCC)http://www.lungcancercoalition.org

Cancer


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Overtoom 60/II1054 HK AmsterdamNetherlands

T: +31-(0)20-683-36-84

F: +31-(0)20-685-50-02


Main contact: Teresa Alves




Key activities: Non-profi t European network of consumers, public-interest NGOs, healthcare providers, academics, media and individuals representing the voice of civil society in medicines policy debates. Advocates for greater transparency of decision making around pharmaceuticals, promotes the rational use of medicines, and works for the provision of unbiased, independent information for prescribers and consumers.



Countries of member groups: Belgium, Cyprus, Finland, France (2), Germany (4), Greece (2), Hungary, Latvia, Netherlands, Poland, Spain, Sweden, Switzerland (4), UK (3).


Current affi liations with the EU: Member of the European Medicines Agency (EMA) Patients’ and Consumers’ Working Party (PCWP).

Revenue

Most recent yearly revenue: €502,000 from the parent organisation, HAI (2010).

Pharmaceutical funding: Does not accept funding from commercial entities.

Main sources of funding: 2010: the parent organisation, HAI, drew income from international donors (€83,000, WHO); and government subsidies (€1.3m, Ministry of Foreign Affairs, Netherlands). 2011: Executive Agency for Health and Consumers (EAHC) (€20,000).

Health Action International-Europe(HAI-Europe)http://www.haiweb.org/01_about_europe_a.htm



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28 Boulevard Charlemagne1000 BrusselsBelgium

T: +32-2-234-36-40

F: +32-2-234-36-49


Main contact: Génon Jensen


Name of representative in Brussels: Génon Jensen





Key activities: Network of international and national not-for-profi t organisations of citizens, patients, health professionals, environmental groups and public-health institutes. Raises awareness of how environment affects health, and demonstrates how policy changes can help protect health and enhance people’s quality of life.

Key campaigns: Runs ‘Sick of Pesticides’, and ‘Prescription for a Healthy Planet’. Supports ‘International Week Without Pesticides’ (every March).

Current EU-funded projects: Partner in ‘Consortium to Perform Human Biomonitoring on a European Scale (COPHES)’, 2009-2012, funded by DG Research and Innovation under the 7th Framework Programme.


Number of member groups: 59 national, European or international member organisations from 22 European countries.

Countries of member groups: Austria, Belgium (8), Bulgaria (4), Croatia (2), Czech Republic, France (4), Germany (2), Hungary (5), Ireland, Italy, Luxembourg (2), Malta, Macedonia (3), Montenegro, Netherlands (7), Poland, Romania (2), Serbia, Slovenia, Sweden, Switzerland, UK (9).

Groups to which organisation is affi liated: Alliance for Lobbying Transparency and Ethics Regulation in the EU (ALTER-EU); European Environmental Citizens Organisation for Standardisation (ECOS); Green 10; International POPS Elimination Network (IPEN).

Current affi liations with the EU: Member of the DG SANCO Expert Group on Indoor Air Quality. Member of the DG SANCO European Partnership for Action Against Cancer (EPAAC).

Revenue


Main sources of funding: 2010-2011, according to the Register of the European Transparency Initiative (ETI): European Commission (€356,000); members’ contributions (€2,000).

Health and Environment Alliance(HEAL)http://www.env-health.org

Public Health


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5

1 Rue de la Pépinière1000 BrusselsBelgium

T: +32-2503-3137

F: +32-2402-3042


Main contact: Anja Leetz


Name of representative in Brussels: Dr Pendo Maro

Position of representative in Brussels: Senior Climate and Energy Advisor



Geographic areas of operation: WHO European region.

Key activities: European element of a global coalition working to ensure that the healthcare sector is ecologically sustainable and does not compromise public health, the environment, or patient safety and care. Aims to allow patients, healthcare workers, and policy makers to access information on climate, energy, materials used in healthcare, and issues linked to health provision and care, in order to increase informed decision making about health policies across Europe. Maintains an online library on environmentally responsible healthcare.

Key campaigns: Runs ‘Prescription for a Healthy Planet’. ‘Acting Now for Better Health’, HCWH’s 30% reduction target for EU climate policy. ‘Mercury-Free Health Care’, an HCWH/WHO initiative to substitute mercury-based medical devices.

Objectives for 2012 onwards: “HCWH aims to educate European policymakers and health providers about the impact of policies on health. We want them to be prepared for the health challenges of cancer, climate change, diabetes, infectious diseases, and obesity.”


Number of member groups: 67 member organisations (including government bodies and professional societies) from 18 European (plus Asian) countries.

Countries of member groups: Austria, Belgium, Czech Republic, Denmark, France, Germany, Ireland, Italy, Macedonia, Netherlands, Poland, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK.

Groups to which organisation is affi liated: European Environmental Citizens’ Organisation for Standardisation (ECOS); Health Care Without Harm (HCWH).

Revenue


Pharmaceutical funding: HCWH states that it does not accept fi nancial support from manufacturers.

Main sources of funding: Health Care Without Harm (HCWH); European Climate Foundation; WHO.

Health Care Without Harm Europe(HCWH Europe)http://www.noharm.org/europe

General Healthcare


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214d Chaussee de Wavre1050 BrusselsBelgium

T: +32-2-626-19-99

F: +32-2-626-95-01

Email: info@healthfi rsteurope.org

Main contact: Amanda Bogg

Position of main contact: Policy Advisor

Name of representative in Brussels: Amanda Bogg

Position of representative in Brussels: Policy Advisor

Contact for representative in Brussels: info@healthfi rsteurope.org



Key activities: Non-profi t, non-commercial alliance of patients, healthcare workers, academics, healthcare experts, and industry. Calls for patient-centred healthcare, and believes that European citizens should benefi t from the best medical treatments. Raises awareness and communicates core messages to EU decision-makers and opinion leaders through events and publications.

Key campaigns: Supports ‘European Patients’ Rights Day’ (every April).

Objectives for 2012 onwards: “HFE priorities will include the issues of patient safety, health technology assessment (HTA), eHealth, and the Innovation Partnership on Active and Healty Ageing.”


Number of member groups: 5 European or international patient groups are included among the member organisations.

Current affi liations with the EU: Attends meetings of the European Parliament Interest Group on Rheumatic and Musculoskeletal Diseases (RMDs).

Revenue

Main sources of funding: Funded by member organisations.

Health First Europe(HFE)http://www.healthfi rsteurope.org

Public Health


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7

Avenue Tervuren 351040 BrusselsBelgium

T: +32-477-53-25-89


Main contact: Kim Ruberg


Name of representative in Brussels: Kim Ruberg

Position of representative in Brussels: General Secretary




Key activities: International non-profi t and non-commercial organisation that collects, processes and circulates information about hearing impairments and their human and socio-economic consequences. Cooperates with national organisations, dialogues with public authorities and others on hearing impairment issues, and runs the world’s largest website on hearing and hearing loss.

Key campaigns: Supports designation of ‘2012 European Year for Active Ageing and Intergenerational Solidarity’.


Number of member groups: 3 international bodies as members, one of which, the International Federation of the Hard Of Hearing (IFHOH), is a patient organisation.

Hear-it AISBLhttp://www.hear-it.org

Disability


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c/o Hiv-DanmarkSkindergade 44, 2. th,1159 CopenhagenDenmark

T: +45-33-32-58-68


Main contact: Henrik Arildsen




Key activities: Independent, voluntary and non-profi t umbrella association of patient organisations committed to the greater involvement of people living with HIV and AIDS (PLWHA) in the development of public policy and the delivery of services. Aims to eradicate the stigma and discrimination experienced by PLWHA in Europe, and to improve the quality of life, care and treatment of PLWHA (and their carers).



Countries of member groups: Albania, Croatia, Czech Republic, Denmark, Estonia, Finland, Greece, Hungary, Iceland, Italy, Kosovo, Latvia, Lithuania, Norway, Poland, Portugal (2), Romania, Serbia, Sweden, Switzerland (2), Turkey, UK (2).

Groups to which organisation is affi liated: None. Many member organisations are members of the European AIDS Treatment Group (EATG).

Current affi liations with the EU: Member of the DG SANCO HIV/AIDS Civil Society Forum (CSF).

Revenue

Pharmaceutical funding: Bristol-Myers Squibb; Gilead Sciences.

Main sources of funding: Donations; grants; membership fees.

HIV Europehttp://www.hiveurope.org

HIV/AIDS


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9

16 rue Barbanègre68330 HuningueFrance


Main contact: Steve Ursprung




Key activities: European association of people with hypophosphatasia (a very rare genetic disease of bone and teeth that affects less than one-in-100,000 individuals). Functions on a European scale on behalf of the small number of patients with the condition per country. Brings together patients, doctors and researchers to work together against hypophosphatasia. Supplies information in three languages.

Key campaigns: Runs a hypophosphatasia information campaign for health professionals.

Objectives for 2012 onwards: “Hypophosphatasie Europe encourages all patients and their families to increase the infl uence of the association by joining it at this time of discussions at international level.”


Number of member groups: Member patients; no member groups.

Groups to which organisation is affi liated: Alliance Maladies Rares; European Organisation for Rare Diseases (EURORDIS).

Revenue

Pharmaceutical funding: None in the most recent year.

Main sources of funding: Gifts, grants, sponsorship.

Hypophosphatasie Europehttp://www.hypophosphatasie.com

Genetic and Rare Diseases / Scientifi c Research


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c/o the Action on Medical Negligence Association (AMNA)27 Woodford DriveArmaghBT60 2AYNorthern Ireland, UK

T: +44-(0)-2837-527-307


Main contact: Eamon Duffy

Position of main contact: Co-ordinator



Key activities: Alliance of seven European patient groups each working with, and supporting, victims of serious medical errors in their respective countries. Discusses the common problems facing victims of serious medical errors, and promotes patient safety by advocating for statutory enactment of patients’ rights.

Key campaigns: IEU-Alliance ‘Declaration on Patient Safety’.


Number of member groups: 7 national member groups in 4 European countries.

Countries of member groups: Germany (2), Ireland, Netherlands, UK (3).

Iatrogenic Europe Unite(IEU-Alliance)http://www.ieu-alliance.org

General Healthcare


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Galeries de la Toison d’Or29 Chaussee d’Ixelles, bte 393/321050 BrusselsBelgium

T: +32-2-502-28-15

F: +32-2-502-80-10


Main contact: Helen Holand


Name of representative in Brussels: Geert Freyhof

Position of representative in Brussels: Director, Brussels Offi ce




Key activities: Non-profi t organisation that campaigns for the rights and interests of people with an intellectual disability (and their families) throughout Europe. Fights for human rights for people with an intellectual disability, inclusion in society, and non-discrimination. Aims to exchange knowledge and experience.

Key campaigns: Supports ‘European Day of People with Disabilities’ (every December).

Objectives for 2012 onwards: “The new EU Disability Strategy 2010-2020 will be a key document for Inclusion Europe. We and our members support implementation of the Strategy, and renew our commitment to building an accessible European society that includes everyone.”

Current EU-funded projects: Partner in ‘Children’s Rights for All’, 2009-2011, funded by the DG Justice DAPHNE III programme 2007-2013.


Number of member groups: 62 member organisations from 34 European countries, and 3 Europe-wide or international members.

Countries of member groups: Albania, Austria (2), Belgium, Bosnia (2), Bulgaria (2), Croatia (3), Cyprus, Czech Republic (3), Denmark (2), Estonia (2), Finland (4), France (3), Germany (3), Greece, Hungary (2), Iceland, Ireland (2), Italy, Latvia (2), Lithuania, Luxembourg (2), Macedonia, Malta (2), Netherlands, Norway (2), Poland, Portugal (2), Romania, Slovakia, Slovenia (2), Spain (2), Sweden (2), Switzerland, UK (3).

Groups to which organisation is affi liated: European Disability Forum (EDF); Platform of European Social NGOs (Social Platform).

Revenue


Main sources of funding: DG Employment, Social Affairs and Equal Opportunities. Membership fees provide about one third of income.

Inclusion Europehttp://www.inclusion-europe.org

Learning Disability


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Geographic areas of operation: Global (including Europe).

Key activities: Global alliance representing patients of all nationalities across all disease areas, and promoting patient-centred healthcare around the world. Members are patients’ organisations working at the international, regional, national and local levels to represent and support patients, their families and carers. Has European members, and is involved in European healthcare issues.

Key campaigns: The WHO ‘Patients for Patient Safety (PFPS)’ programme.

Objectives for 2012 onwards: “For 2010-2014, IAPO plans to strengthen the impact of the global patients’ voice in decision-making processes globally, increase the participation of IAPO member patient representatives in IAPO’s work, and develop IAPO’s own capacity and sustainability.”

Current EU-funded projects: Partner in ‘Pharmacoepidemiological Research on Outcomes of Therapeutics by a European Consortium (PROTECT)’, 2009-2014, funded by the the Innovative Medicines Initiative (IMI), which, in turn, is partly funded by the 7th Framework Programme.


Number of member groups: 84 full member organisations and 9 associate member organisations from 24 European countries, plus 10 pan-European organisations (and 7 international organizations based in Europe).

Countries of member groups: Bulgaria (5), Croatia (3), Cyprus (3), Czech Republic (3), Denmark, Estonia, Finland, Germany (2), Greece, Hungary (6), Ireland (4),

Italy, Lithuania, Macedonia, Netherlands (2), Poland (4), Portugal (2), Romania (2), Serbia, Slovakia (2), Slovenia (4), Spain (15), Turkey (2), UK (18).

Groups to which organisation is affi liated: Health First Europe (HFE).

Current affi liations with the EU: Member of the European Medicines Agency (EMA) Patients’ and Consumers’ Working Party (PCWP). Member of the DG SANCO EU Health Policy Forum (EUHPF).

Revenue

Most recent yearly revenue: US$784,000/approximately €549,000 (2010).

Pharmaceutical funding: 2010 gold donors, each giving US$50,000/approximately €35,000 were: Eli Lilly; GSK; International Federation of Pharmaceutical Manufacturers and Associations (IFPMA); Novartis; Pfi zer; Pharmaceutical Research and Manufacturers of America (PhRMA); Sanofi -Aventis. 2010 silver donors, each giving US$25,000/approximately €17,000 were: Amgen; Johnson & Johnson. Also a funder: Novo Nordisk.

Main sources of funding: 2010: corporate sponsors (US$500,000/approximately €350,000); Global Patients’ Congress (US$185,000/approximately €129,000); membership fees (US$15,000/approximately €10,000).

International Alliance of Patients’ Organizations(IAPO)http://www.patientsorganizations.org

General Healthcare

703 The Chandlery50 Westminster Bridge RoadLondon, SE1 7QYUK

T: +44-(0)-20-7721-7508

F: +44-(0)-20-7721-7596


Main contact: Joanna Groves



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PO Box 244TadworthSurreyKT20 5WQUK

T: +44-(0)-1737-813-872

F: +44-(0)-1737-812-712


Main contact: Kathy Oliver

Position of main contact: Co-Director



Key activities: Builds awareness about the challenges of brain tumours, and advocates for equal access to therapies. Supports moves towards greater international collaboration between brain tumour patient and caregiver groups, clinicians, commercial organisations, researchers and allied healthcare professionals with an interest in this disease area.

Key campaigns: Runs ‘International Brain Tumour Awareness Week’ (usually October/November), and ‘Walk Around the World for Brain Tumours’ (every January to November).

Objectives for 2012 onwards: “The IBTA will encourage the establishment of brain tumour patient support, information and advocacy groups in countries where they do not exist, and will continue to publish ‘Brain Tumour’ magazine (copies distributed to 83 countries in 2011).”


Number of member groups: 197 brain tumour and cancer-relevant organisations supported the IBTA’s work in 2010 in a non-fi nancial way as supporters, not as members.

Groups to which organisation is affi liated: Cancer 52; European Action Against Rare Cancers (EAARC); European Cancer Patient Coalition (ECPC); European Federation of Neurological Associations (EFNA).

Revenue

Pharmaceutical funding: In 2010: Antisense Pharma; AstraZeneca; Boehringer Ingelheim; Eli Lilly; Merck Serono; MSD Oncology; Novartis; NovoCure.

Main sources of funding: Pharmaceutical companies; charitable organisations; individuals.

International Brain Tumour Alliance(IBTA)http://www.theibta.org

Cancer


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IBE International headquarters11 Priory HallStillorganBlackrockCo. Dublin, Ireland

T: +353-1-210-88-50

F: +353-1-210-84-50


Main contact: Aisling Farrell




Key activities: The European region of an international organisation for national epilepsy organisations. Supports the development of new and existing members, exchanges information, and sets standards that provide an international policy focus and an identity for people with epilepsy.

Key campaigns: Partner in ‘European Epilepsy Day’ (every February).

Objectives for 2012 onwards: “IBE-Europe will work towards public awareness of epilepsy, upgrading care, and aiming for a better quality of life for less-privileged Europeans with epilepsy.”


Number of member groups: 50 member organisations (mainly patient groups) in 31 European countries.

Countries of member groups: Austria, Belgium, Bulgaria (2), Croatia, Cyprus, Czech Republic (3), Denmark (2), Estonia, Finland, France (4), Germany (2), Greece, Hungary, Iceland, Ireland, Italy, Lithuania (2), Macedonia, Malta, Netherlands (4), Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland (3), UK (6).

Groups to which organisation is affi liated: International Bureau for Epilepsy (IBE).

Revenue

Most recent yearly revenue: The parent organisation, IBE: US$2.2m/approximately €1.5m (2009).

Pharmaceutical funding: To the parent, IBE, in 2009: Dainippon Sumitomo Pharma Co Ltd; Eisai Europe Ltd; UCB Pharma. GSK points out that its 2010 donation of €20,000 to the parent, IBE, represented 3% of the organisation’s revenue that year.

Main sources of funding: Commerce and industry; international congresses; membership dues.

International Bureau for Epilepsy-Europe(IBE-Europe)http://www.ibe-epilepsy.org/regions/?c=Europe



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PO Box 592AbingdonOxfordshireOX14 9FXUK

T: +44-(0)-1235-84-7187


Main contact: Michael Livingston

Position of main contact: Contact person



Key activities: Formed in 2010 from the merger of HEART EU and MEDPED International. Partnership of patient groups and clinicians that advocates for improved medical management of people with inherited hypercholesterolaemia. Uses government links to campaign for the implementation of preventive screening programmes.

Objectives for 2012 onwards: “Interchol is now seeking additional European partners to join an active committee to create, underwrite, and take action at European Parliament level for the adoption of targeted and cost-effective preventive screening programmes.”


Number of member groups: 3 member patient organisations from 3 European countries.

Countries of member groups: Norway, Spain, UK.

Groups to which organisation is affi liated: European Platform for Patients’ Organisations, Science and Industry (EPPOSI).

Revenue

Most recent yearly revenue: Not yet available at time of publication of this Directory.

International Cholesterol Foundation(Interchol; ICF)http://www.interchol.org



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IDF-Europe166 Chaussée de la Hulpe 1661170 BrusselsBelgium

T: +32-2-538-55-11

F: +32-2-538-55-14


Main contact: Sophie Peresson

Position of main contact: Regional Manager

Name of representative in Brussels: Sophie Peresson

Position of representative in Brussels: Regional Manager



Geographic areas of operation: Europe (and global).

Key activities: One of seven regional groupings in its international parent organisation. Advocates for people with diabetes and their healthcare providers, provides members with policy support, professional guidelines, information sharing, and venues for ideas exchange.

Key campaigns: Supports ‘World Diabetes Day’ (every November), and ‘European Year of Volunteering 2011’.

Objectives for 2012 onwards: “IDF-Europe aims to raise awareness about diabetes among the EU institutions, and to put diabetes on the EU political agenda. We want to increase the profi le of diabetes at EU political level, and infl uence political decisions that concern diabetes.”

Current EU-funded projects: Partner in two projects: ‘Personal Glucose Predictive Diabetes Advisor (DIAdvisor)’, 2008-2012, funded by Information and Communication Technologies (ICT) Research under the 7th Framework Programme; and ‘Artifi cial Pancreas@home (AP@home)’, 2010-2014, funded by the 7th Framework Programme.



Countries of member groups: Albania, Austria, Belgium (2), Bulgaria, Croatia, Cyprus, Czech Republic (2), Denmark, Estonia, Finland, France,

Germany, Greece (2), Hungary (2), Iceland, Ireland, Italy (5), Latvia (2), Lithuania, Luxembourg, Macedonia, Malta, Netherlands (2), Norway, Poland (2), Portugal (2), Romania, Serbia (2), Slovakia (2), Slovenia, Spain, Sweden (2),

Switzerland, Turkey (2), UK.

Groups to which organisation is affi liated: European Chronic Disease Alliance (ECDA); European Patients’ Forum (EPF); European Public Health Alliance (EPHA); Health First Europe (HFE).

Current affi liations with the EU: Member of the European Parliament EU Diabetes Working Group (EUDWG). Member of the DG SANCO EU Platform for Action on Diet, Physical Activity and Health. Member of the DG SANCO EU Health Policy Forum (EUHPF). Member of the European Medicines Agency (EMA) Patients’ and Consumers’ Working Party (PCWP), and observer at the EMA Healthcare Professionals’ Working Group (HCPWG).

Revenue

Most recent yearly revenue: Approximately €625,000 in 2010, according to GSK.

Pharmaceutical funding: 2010: AstraZeneca; Bayer; Bioton; Eli Lilly; GSK; Merck Sharp & Dohme; Novartis; Novo Nordisk; Pfi zer Europe; Sanofi Aventis. GSK points out that its 2010 donation of €25,000 represented less than 4% of the organisation’s revenue that year.

Main sources of funding: Medical device and pharmaceutical companies; IDF Global (€25,000 annually); member associations.

International Diabetes Federation-European Region(IDF-Europe)http://www.idf.org/regions/europe

Diabetes


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Cellebroersstraat 161000 BrusselsBelgium

T: +32-(0)2-502-0413F: +32-(0)2-502-1129Email: [email protected] contact: Lieven Bauwens


Name of representative in Brussels: Lieven Bauwens




Geographic areas of operation: Europe and worldwide.

Key activities: World-wide umbrella organisation for spina bifi da and hydrocephalus regional and national organisations. Aims to disseminate information and expertise to families, individuals, professionals and volunteers, improve the quality of life of people with spina bifi da and hydrocephalus, and to decrease the prevalence of spina bifi da and hydrocephalus by primary prevention.

Objectives for 2012 onwards: “In the future, IF will act as a human rights advocate, voicing the concerns of our target group. We will work for primary prevention, aim for international solidarity, and develop our network of organisations.”



Countries of member groups: Austria, Belgium, Croatia, Denmark, Estonia, Finland, France, Germany, Greece, Ireland, Italy (2), Luxembourg, Netherlands, Norway, Poland (2), Portugal, Romania, Serbia, Slovakia, Spain (2), Sweden, Switzerland, Turkey, UK (2).


Revenue


Pharmaceutical funding: 2010: Bayer Schering Healthcare.

Main sources of funding: 2010: DG Employment, Social Affairs and Equal Opportunities; Norwegian Agency for Development Cooperation (Norad).

International Federation for Spina Bifi da and Hydrocephalus(IF) http://www.ifglobal.org

Congenital


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9 rue Juste-Olivier1260 NyonSwitzerland

T: +41-22-994-01-00

F: +41-22-994-01-01


Main contact: Patrice McKenney




Key activities: Global alliance of patient, medical, and research societies, scientists, healthcare professionals, and corporate partners across many fi elds. Increases awareness and understanding of osteoporosis, motivates people to take action to prevent, diagnose, and treat osteoporosis, and supports national osteoporosis societies.

Key campaigns: Supports ‘World Osteoporosis Day (WOD)’ (every October).

Objectives for 2012 onwards: “One of the most important IOF objectives over the next few years is to collaborate with patient groups in other disease areas, to put chronic disease (including bone health) on the agenda of EU Member States. We will also roll out ‘OsteoLink’, the IOF social network, across more countries.”

Current EU-funded projects: Joint lead in ‘Osteolink’, 2010-2011, funded by the Ambient Assisted Living Joint Programme (AAL JP).


Number of member groups: 104 member organisations (many of which are patient groups) from 34 European countries.

Countries of member groups: Austria (4), Belgium (3), Bulgaria (5), Croatia (2), Cyprus (2), Czech Republic (3), Denmark (2), Estonia, Finland (2), France (5), Germany (11), Greece (4), Hungary (2), Iceland, Ireland, Italy (10), Latvia (2), Lithuania (2), Luxembourg, Macedonia, Malta, Netherlands (2), Norway, Poland (4), Portugal (3), Romania (4), Serbia, Slovakia (2), Slovenia (2), Spain (6), Sweden (3), Switzerland (2), Turkey (6), UK (3).

Revenue

Most recent yearly revenue: CHF10.4m/approximately €8.6m (2010).

Pharmaceutical funding: 2010: Alliance for Better Bone Health (ABBH) [compromising Procter & Gamble Pharmaceuticals, Sanofi -Aventis]; Amgen; Bio Sidus Argentina; Chugai Pharmaceutical Co. Ltd; Eli Lilly; MSD; Novartis; Pablo Cassará Argentina; Pfi zer México; Roche; Rottapharm Madaus; Roux Ocefa; Servier; Warner Chilcott. GSK points out that its 2010 donation of $745,000/€530,000 represented 5% of the organisation’s revenue that year.

Main sources of funding: 2010: pharmaceutical companies; medical device companies; medical supplies manufacturers; other healthcare-related or non-healthcare companies; congress and membership fees; foundation grants; European Commission (Osteolink project).

International Osteoporosis Foundation(IOF)http://www.iofbonehealth.org

Bone


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Rue du Marché aux Herbes 105, B 141000 BrusselsBelgium

T: +44-(0)1503-250-668

F: +44-(0)1503-250-961


Main contact: Johan Prevot



Geographic areas of operation: Global.

Key activities: Association of national patient organisations dedicated to improving awareness, access to early diagnosis, and optimal treatments for people with primary immunodefi ciency (PID) worldwide. Works as the global advocate for the PID patient community, in cooperation with its national member organisations and major PID stakeholders.

Key campaigns: Supports ‘World Primary Immunodefi ciencies (WPIW) Week’ (every April).



Countries of member groups: Austria, Belgium, Cyprus, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Spain, Sweden, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: European Organisation for Rare Diseases (EURORDIS); European Patients’ Forum (EPF).


Revenue

Pharmaceutical funding: Baxter; CLS Behring; Grifols; Kedrion; Laboratoire Français du Fractionnement et des Biotechnologies (LFB); Octapharma; Talecris.

Main sources of funding: Pharmaceutical companies; national member organisations.

International Patient Organisation for Primary Immunodefi ciencies(IPOPI) http://www.ipopi.org

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IPPF European Network146 Rue Royale1000 BrusselsBelgium

T: +32-(2)-250-09-50

F: +32-(2)-250-09-69


Main contact: Vicky Claeys

Position of main contact: Regional Director

Name of representative in Brussels: Vicky Claeys

Position of representative in Brussels: Regional Director




Key activities: One of the six regions of the IPPF, a worldwide movement of national organisations working with, and for, communities and individuals. Aims to safeguard sexual and reproductive health and rights. Involved in advocacy, programme development and institution building.

Key campaigns: Supports ‘International Women’s Day’ (every March).

Objectives for 2012 onwards: “A lot of work is still to be done in Europe by IPPF EN because of the variances between countries and communities that exacerbate health and social inequalities.”



Countries of member groups: Albania, Austria, Belgium (2), Bosnia, Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Latvia, Lithuania, Macedonia, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Spain, Sweden, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: European Public Health Alliance (EPHA); European NGO Confederation for Relief and Development (CONCORD); Platform of European Social NGOs (Social Platform).

Current affi liations with the EU: Observer status with the Inter-European Parliamentary Forum on Population and Development (EPF).

Revenue


Main sources of funding: 2009: €3.16m from the parent body, the IPPF. €2.79m from other sources: Bill and Melinda Gates Foundation; European Commission; UK Department for International Development (DFID).

International Planned Parenthood Federation European Network(IPPF EN) http://www.ippfen.org/en



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IPA Secretariatc/o Vereniging Spierziekten Nederland (VSN)Luitenant Generaal van Heutszlaan 63743 JN BaarnNetherlands

T: +31-(35)-548-0480

F: +31-(35)-548-0499


Main contact: Wilma Treur



Geographic areas of operation: Global, with a strong European presence.

Key activities: Federation of Pompe disease patient groups. Seeks to coordinate activities, and share experience and knowledge between groups. Campaigns for early diagnosis, and effective, affordable, and safe therapies. Provides information and support to people with Pompe disease, and works closely with industry to stimulate research into the causes, treatment and prevention of Pompe disease.


Number of member groups: No member groups, but 12 affi liate organisations from 12 European countries.

Countries of member groups: Austria, France, Germany, Greece, Italy, Netherlands, Norway, Poland, Spain, Switzerland, Turkey, UK.

Groups to which organisation is affi liated: Patients Network for Medical Research and Health (EGAN).

International Pompe Association(IPA)http://worldpompe.org



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42 Blvd. de la Libération93203 St. Denis CedexFrance

T: +33-1-48-13-71-20

F: +33-1-48-09-17-67


Main contact: Ursel Broesskamp-Stone

Position of main contact: Vice President for Europe



Key activities: European regional offi ce of the International Union for Health Promotion and Education. Committed to improving health and wellbeing through education, community action, and the development of healthy public policy. Works to strengthen understanding and expertise in the area of health promotion, and lobbies policy- and decision-makers.

Objectives for 2012 onwards: “IUPE/Euro will concentrate on health and quality of life, and health and solidarity, aiming to build partnerships across sectors to leverage resources in the current economic situation.”

Current EU-funded projects: Partner in ‘Core Competencies Framework for Health Promotion Handbook (CompHP)’, 2009-2012, funded by the Executive Agency for Health and Consumers (EAHC).


Number of member groups: Trustee, institutional, and individual members from across Europe.


Revenue


Main sources of funding: The parent body (IUHPE); membership fees. Parent body’s main donor: French Health Directorate.

International Union for Health Promotion and Education/European Region(IUHPE/Euro) http://www.iuhpe.org/index.html?page=603&lang=en

Public Health


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Am Rothenanger 1b85521 RiemerlingGermany

F: +49-89-6283-6808


Main contact: Jan Geissler



Geographic areas of operation: German-speaking parts of Europe (Austria, Germany, Luxembourg, and Switzerland).

Key activities: Online community for German-speaking patients with leukemia. Provides news and knowledge about progress in research and leukemia therapy, and a discussion forum. Members of the online community can ask questions, submit articles, and suggest books and web links.


Number of members groups: Over 1,600 individual members.

Countries of member groups: Austria, Germany, Luxembourg, Switzerland.

Groups to which organisation is affi liated: CML Advocates Network; Deutsche Leukämie- und Lymphom-Hilfe (DLH); European Cancer Patient Coalition (ECPC).

Revenue


Pharmaceutical funding: Bristol Myers Squibb; GSK; Novartis; Pfi zer.

Main sources of funding: Pharmaceutical companies; donations from the public.

LeukaNET e.V.[Formerly Leukämie-Online e.V.]http://www.leuka.net

Cancer


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8 Legge LaneCoseleyWest MidlandsWV14 8RQUK

T: +44-1902-49-82-36


Main contact: Yvonne Norton




Key activities: Umbrella association of national lupus self-help groups in Europe, representing around 30,000 patients. Aims to make lupus a well-known illness throughout Europe, and, in partnership with the medical profession, secure high-quality standards of treatment and support for people with lupus, their families and their carers.

Key campaigns: Coordinates ‘World Lupus Day’ (every May).

Objectives for 2012 onwards: “Lupus Europe plans to focus on raising awareness within key audiences about the work we do, and the impact of lupus on people with the condition.”



Countries of member groups: Belgium (2), Cyprus, Denmark, Finland, France (2), Germany, Hungary, Iceland, Ireland, Italy, Malta, Netherlands, Norway, Portugal, Romania, Slovenia, Spain, Sweden, Switzerland, UK.


Revenue

Most recent yearly revenue: Approximately €41,000 in 2010, according to GSK.

Pharmaceutical funding: GSK points out that its 2010 donation of €7,000 represented 17% of the organisation’s revenue that year.

Main sources of funding: Pharmaceutical company donations; fundraising activities; membership fees.

Lupus Europehttp://www.lupus-europe.org



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c/o Global Lymphoma Coalition (GLC)16-1375 Southdown Road, #228MississaugaOntario, L5H 4K3Canada

T: 1-416-571-3103


Main contact: Karen Van Rassel



Geographic areas of operation: Europe (and the rest of the world).

Key activities: Global network of not-for-profi t lymphoma patient organisations with a vision to free the world of lymphoma. Raises awareness of lymphomas, seeks to improve understanding of lymphomas, and works to ensure best practice management of lymphomas.

Key campaigns: Runs ‘World Lymphoma Awareness Day (WLAD)’ (every September). Supports ‘World Cancer Day’ (every February).

Objectives for 2012 onwards: “Projects in the next years will support our strategic direction: a global two-way e-resource centre for information on demographics, global surveys, treatment access, clinical trials, and research updates for member groups, partners, healthcare and research communities, and the media.”



Countries of member groups: Belgium, Bulgaria, Croatia, Czech Republic, Denmark, France, Germany (2), Hungary, Ireland, Italy, Latvia, Lithuania, Netherlands (2), Poland, Serbia, Slovakia, Slovenia (2), Spain, Sweden, Switzerland, Turkey, UK (2).

Groups to which organisation is affi liated: European Cancer Patient Coalition (ECPC); European Hematology Association (EHA); International Alliance of Patients’ Organizations (IAPO); Myeloma Euronet; Union for International Cancer Control (UICC).

Current affi liations with the EU: Members attend the DG Research and Innovation Regional Issues Working Group.

Revenue

Most recent yearly revenue: Canadian $252,000/approximately €184,000 (2010).

Pharmaceutical funding: Allos Therapeutics Inc; EUSA Pharma; F. Hoffmann-La Roche (funds WLAD); Johnson & Johnson; Millennium Pharmaceuticals, Inc; Novartis; Takeda Oncology Company. GSK points out that its 2010 donation of €15,000 represented about 10% of the organisation’s revenue that year.


Lymphoma Coalition(LC)http://www.lymphomacoalition.org

Cancer


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Hercegprímás u. 11.1051 BudapestHungary

T: +36-1-413-27-30

F: +36-1-413-27-39


Main contact: Oliver Lewis



Geographic areas of operation: Europe (and Central Asia).

Key activities: International human rights organisation that advances the human rights of children and adults with an intellectual or psycho-social disability. Uses a combination of law and advocacy to promote equality and social inclusion. Conducts workshops on the discrimination and stigma experienced by people with depression.


Number of member groups: No member organisations.


Revenue


Pharmaceutical funding: MDAC notes that it does not accept funding from pharmaceutical companies.

Main sources of funding: 2010: Civil Rights Defenders; Ökotárs Foundation; Open Society Institute (OSI); Sigrid Rausing Trust; UK Foreign and Commonwealth Offi ce; Zennstrom Philanthropies.

Mental Disability Advocacy Center(MDAC)http://www.mdac.info

Mental Health


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7

Boulevard Clovis 71000 BrusselsBelgium

T: +32-2-280-04-68

F: +32-2-280-16-04


Main contact: Mary Van Dievel


Name of representative in Brussels: Mary Van Dievel





Key activities: NGO that promotes positive mental health and wellbeing, the prevention of mental distress, the improvement of care, advocacy, and the protection of the human rights of users and ex-users of mental health services (and their families and carers). Represents associations, organisations and individuals active in the fi eld of mental health and wellbeing in Europe.

Key campaigns: Runs ‘Make Steps Towards Social Inclusion’. Supports ‘European Year of Volunteering 2011, and ‘World Human Rights Day (every December).

Objectives for 2012 onwards: “MHE’s overall goal is to develop and strengthen MHE’s capacities, and those of its member organisations (including people with a mental health problem).”



Countries of member groups: Austria, Belgium (12), Bulgaria, Croatia (2), Cyprus, Czech Republic (2), Denmark (3), Estonia, Finland (3), France (3), Germany (4), Greece (3), Hungary (2), Iceland, Ireland, Italy, Kosovo, Latvia, Lithuania, Luxembourg, Malta, Netherlands (5), Norway, Poland (3), Portugal (2), Romania (2), Serbia, Slovakia (3), Slovenia (2), Spain (5), Sweden, Switzerland, UK (8).

Groups to which organisation is affi liated: European Coalition for Community Living (ECCL); European Disability Forum (EDF); European Patients’ Forum (EPF); European Public Health Alliance (EPHA); European Women’s Lobby (EWL); Platform of European Social NGOs (Social Platform).


Revenue



Main sources of funding: 2010: DG Employment, Social Affairs and Inclusion’s PROGRESS Programme for Employment and Social Solidarity (2007-2013) (80% of annual revenue); membership fees (8%); donations from individuals. No corporate donations in 2010.

Mental Health Europe(MHE)http://www.mhe-sme.org

Mental Health


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Falltorweg 665428 RüsselsheimGermany

T: +49-(0)6142-3-21-23

F: +49-(0)6142-30-11-85


Main contact: Anita Waldmann


Name of representative in Brussels: European Cancer Patient Coalition (ECPC) acts as Brussels representative.



Key activities: Non-profi t network organisation of multiple myeloma patient groups dedicated to raising awareness of multiple myeloma. Provides information on diagnosis, treatment and care of people living with multiple myeloma, and supports member organisations’ missions. Scheduled to merge with the European Myeloma Platform (EMP) at about the time of publication of this Directory.

Key campaigns: Runs ‘Early Myeloma Diagnosis Awareness’, and the ‘Multiple Myeloma Manifesto’. Supports ‘European Patients’ Rights Day’ (every April).

Objectives for 2012 onwards: “ME will be providing multi-lingual information on appropriate diagnosis, treatment, and care; advocating the cause of myeloma patients and their needs among EU healthcare policy makers; and building partnerships among ME members.”



Countries of member groups: Austria, Croatia (2), Cyprus, Czech Republic (2), Germany (10), Greece, Latvia, Lithuania, Portugal, Romania (3), Serbia (2), Slovakia, Slovenia, Spain (2), Sweden, Switzerland, Turkey (2), UK (3).

Groups to which organisation is affi liated: European Cancer Patient Coalition (ECPC); European CanCer Organisation (ECCO); European Organisation for Rare Diseases (EURORDIS); Lymphoma Coalition (LC).


Revenue


Pharmaceutical funding: Amgen; Celgene GmbH; Celgene International Sàrl; Genzyme; Janssen-Cilag GmbH; Novartis Pharma; Ortho Biotech; Roche Pharma.

Main sources of funding: Pharmaceutical companies; donations; speaker honoraria and reimbursements.

Myeloma Euronet(ME)http://www.myeloma-euronet.org

Cancer


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Community HallMain StreetKilleaghCounty CorkIreland

T: +353-(0)24-95-561

F: +353-(0)87-987-7619


Main contact: Theresa Millea




Key activities: Network detailing the facilities in European countries that are available to help people who have been bereaved by suicide. Provides information and contact details about the support groups in each country, including whether the groups offer services for free, and if their membership is open or closed.


Number of member groups: 194 support groups and associated facilities from 16 European countries.

Countries of member groups: Austria (8), Belgium (18), Denmark, Estonia, Finland, France (10), Germany (23), Ireland (53), Lithuania, Netherlands (21), Norway (14), Slovenia, Sweden (28), Switzerland (9), Turkey, UK (4).

National Suicide Bereavement Support Network(NSBSN)http://www.nsbsn.org/europeandirectory.htm

Mental Health


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INSERM SC1196 rue Didot75014 ParisFrance

T: +33-(0)1-56-53-81-37

F: +33-(0)1-56-53-81-38


Main contact: Prof Dr Ségolène Aymé




Key activities: Free-of-charge, searchable-by-disease-name database dedicated to information on rare diseases and orphan drugs. Supplies patients and others with information about rare diseases, specialist outpatient clinics, clinical laboratories, research projects, patient support groups, and relevant websites. Collects data from 32 European countries. Not a patient group, but included in this Directory because of its value to patients.

Current EU-funded projects: Partner in ‘TREAT-NMD’, 2007-2011, funded by the 6th Framework Programme.


Number of member groups: No members; run by a consortium of partners (one from 32 European countries).

Countries of member groups: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK.


Current affi liations with the EU: Leads, and provides the scientifi c secretariat for, the DG SANCO EU Committee of Experts on Rare Diseases.

Revenue

Pharmaceutical funding: Alexion Pharmaceuticals Inc; AVI BioPharma; Les Entreprises du Médicament (LEEM); GSK; Pfi zer.

Main sources of funding: Association Française contre les Myopathies (AFM); Caisse Nationale de Solidarité pour l’Autonomie (CNSA); DG SANCO and DG Research and Innovation; Fondation Groupama pour la Santé; Institut National de la Santé et de la Recherche Médicale (INSERM); Ministère du Travail, de l’Emploi et de la Santé Français.

ORPHANEThttp://www.orpha.net



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Sturzstraße 1796049 BambergGermany

T: +49-951-60-3316


Main contact: Ute Wallentin



Geographic areas of operation: Europe (plus international associate members).

Key activities: Represents people with osteogenesis imperfecta (OI, brittle bone disease), supports OI families and OI groups, and networks between OI patients and professionals. Represent the interests of members at a European level, and collects, publishes and exchanges information on OI.

Objectives for 2012 onwards: “OIFE will be looking at psychological issues in OI, working on organising an international meeting for OI adults, and will produce a proposal about studying the relationship between heart disease and OI.”



Countries of member groups: Belgium (2), Croatia, Denmark, Finland, France, Germany, Italy, Netherlands (2), Norway, Poland, Portugal, Spain (2), Sweden, Switzerland, UK.


Revenue

Main sources of funding: Annual membership fees.

Osteogenesis Imperfecta Federation Europe(OIFE)http://www.oife.org



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c/o VSOP (Dutch Genetic Alliance)Koninginnelaan 233762 DA SoestNetherlands

T: +31-(0)35-603-4040

F: +31-(0)35-602-7440


Main contact: Dr Cor Oosterwijk




Key activities: Network of national genetic alliances and European disease-specifi c patient groups with a special interest in genetics, genomics, and biotechnology. Works for a patient voice in research and health policy. Articulates a patient-focused perspective on genetic and medical biotechnological issues, and on their ethical, legal, psychosocial and cultural implications in the European political, scientifi c and industrial arena.


Current EU-funded projects: Partner in two projects funded by the 7th Framework Programme: ‘Genetic and Epigentic Networks in Cognitive Dysfunction (GENCODYS)’, 2010-2015; and ‘Global Research in Paediatrics (GRIP)’, 2011-2015.


Number of member groups: 13 European organisations, 1 regional alliance (Eastern Europe), and 4 national organisations.

Countries of member groups: National organisations from the Netherlands, Sweden, UK (2).

Groups to which organisation is affi liated: European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); International Genetic Alliance of Parent and Patient organisations (IGA).


Revenue

Pharmaceutical funding: Amgen; Genzyme; Novartis; Roche.

Main sources of funding: European Commission; pharmaceutical companies; Netherlands Organisation for Health Research and Developmen (ZonMw).

Patients Network for Medical Research and Health(EGAN) [Formerly European Genetic Alliances’ Network]http://www.egan.eu



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Rue de la Pépinière, 11000 BrusselsBelgium

T: +32-2-503-08-37

F: +32-2-402-30-42


Main contact: Henriette Christensen

Position of main contact: Policy Advisor

Name of representative in Brussels: Henriette Christensen

Position of representative in Brussels: Policy Advisor




Key activities: Network of grassroots consumer, public health, and environmental organisations working to replace the use of hazardous pesticides with ecologically-sound alternatives. Serves as a focal point for NGO advocacy and public participation in EU pesticide policy, and orchestrates independent food-testing initiatives to inform consumers.

Objectives for 2012 onwards: “As Europe’s pesticide-approval process has yet to tackle concerns like endocrine disruption and increased sensitivity among children and foetuses, PAN Europe is joining forces with everybody willing to help us win the argument for integrated agricultural production.”



Countries of member groups: Austria (2), Belgium (3), Bulgaria (2), Denmark (2), France, Germany (2), Hungary (2), Ireland, Italy, Macedonia, Netherlands (4), Poland (2), Slovakia, Slovenia, Sweden, UK (2).

Groups to which organisation is affi liated: Health and Environment Alliance (HEAL).

Current affi liations with the EU: Member of the DG SANCO Advisory Group on the Food Chain, Animal and Plant Health. Member of the DG Environment Advisory Group on Biocides. Member of the DG Agriculture Advisory Group on Organic Farming.

Revenue


Pharmaceutical funding: PAN Europe states that it does not accept donations from private companies, but may consider doing so in the future.

Main sources of funding: 2010: European Commission (£67,000/€76,000); Ecology Trust (£51,000/€58,000); Sigrid Rausing Trust (£45,000/€51,000).

Pesticide Action Network Europe(PAN Europe)http://www.pan-europe.info

Public Health


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Square de Meeûs 181050 BrusselsBelgium

T: +32-(0)2-511-37-14

F: +32-(0)2-511-19-09


Main contact: Pierre Baussand


Name of representative in Brussels: Pierre Baussand





Key activities: Brings together European non-governmental organisations, federations and networks working to build an inclusive society and to promote the social dimension of the European Union. Member organisations’ specialties include health, reproductive rights, women, people with a disability, older people, and young people, children and families.

Key campaigns: Supports ‘2012 European Year of Intergenerational Solidarity’.

Objectives for 2012 onwards: “For 2012 and beyond, Social Platform will concentrate on advocacy work on common recommendations on how to build a caring society, and to enhance the quality of health and social services. Our long-term objective is for EU institutions to invest in care infrastructure and social protection systems.”


Number of member groups: 42 member Europe-wide or international NGOs (many health-oriented).

Groups to which organisation is affi liated: EU Civil Society Contact Group; Spring Alliance.

Current affi liations with the EU: Participation in many European Commission working groups.

Revenue


Main sources of funding: 2009: European Commission (€677,000); membership fees; project funding.

Platform of European Social NGOs(Social Platform)http://www.socialplatform.org



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Lindenweg 892507 NabburgGermany

T: +49-(0)94-33-407

F: +49-(0)94-33-407


Main contact: Dieter Schlegel




Key activities: Represents the interests of people with this viral infection. Collates information about scientifi c work on poliomyelitis, making it more widely available, including to patients. Members provide each other with mutual support.

Polio Initiative Europa e.V.(PIE)http://www.polio-initiative-europa.de

Infectious


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Robert Schaefer, Rare Cancers Europec/o European Society for Medical Oncology (ESMO)Brunnenstrasse 178/17910119 BerlinGermany

T: +49-30-2887-9755

F: +49-30-2887-9766


Main contact: Robert Schaefer

Position of main contact: Senior Project Manager



Key activities: Multi-stakeholder initiative that brings together professional societies, cancer and rare disease associations, rare cancer networks, and reference centres, patient advocacy groups, and the industry, all working together to put rare cancers on the European policy agenda, and to implement 39 political recommendations addressing issues of particular relevance in rare cancers.

Key campaigns: Runs ‘Call to Action’.

Objectives for 2012 onwards: “The RCE’s goals are: improved methodology of clinical studies in rare cancers; better-organised healthcare for people with a rare cancer; and greater access to new therapies for rare cancer patients across the EU.”


Number of member groups: 19 Europe-wide umbrella groups.

Groups to which organisation is affi liated: European Society for Medical Oncology (ESMO).

Revenue


Pharmaceutical funding: 2011: Novartis Oncology (€55,000); Pfi zer Oncology (€50,000); PharmaMar (€5,000); Sanofi -Aventis (€50,000).

Main sources of funding: Industry.

Rare Cancers Europe(RCE) [Formerly European Action Against Rare Cancers; EAARC]http://www.rarecancers.eu

Cancer


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Ausstellungstraße 368005 ZürichSwitzerland

T: +41-44-444-10-77

F: +41-44-444-10-70


Main contact: Christina Fasser



Geographic areas of operation: International.

Key activities: Voluntary, charitable, umbrella association of national societies that seek a cure for retina pigmentosa, macular degeneration, Usher syndrome, and allied retinal dystrophies. Promotes the search for treatments, provides information, encourages public awareness, and seeks the foundation of new member societies.

Key campaigns: Supports ‘Rare Disease Day’ (every February) and ‘World Retina Week’ (every September).

Objectives for 2012 onwards: “Retina International intends to promote translational research.”

Current EU-funded projects: Partner in ‘Visual Impairment and Degeneration: a Road-Map for Vision Research within Europe (EuroVisionNet)’, 2008-2012, funded by DG Research and Innovation under the 7th Framework Programme.



Countries of member groups: Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Lithuania, Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, UK.

Groups to which organisation is affi liated: AMD (Age-Related Macular Degeneration) Alliance International; European Disability Forum (EDF); European Federation of Neurological Associations (EFNA); European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); Patients Network for Medical Research and Health (EGAN).

Revenue




Retina Internationalhttp://www.retina-international.org

Disability


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c/o Rett UKLangham House WestMill StreetLutonBedfordshire, LU1 2NAUK

T: +44-(0)1582-798-910


Main contact: Yvonne Milne




Key activities: Non-profi tmaking organisation that represents the interests of Europeans with Rett syndrome (and their families). Publicises Rett syndrome to the public, professionals, carers, and to all concerned in European countries, promotes research into Rett syndrome, and disseminates information about the disorder and about support for families and carers.



Countries of member groups: Austria, Belgium, Croatia, Czech Republic, Denmark, France, Germany, Hungary, Ireland, Italy (2), Netherlands, Norway, Poland, Portugal, Serbia, Spain (2), Sweden, Switzerland, Turkey, UK.


Revenue


Rett Syndrome Europe(RSE)http://www.rettsyndrome.eu



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RtD-Europe Secretariatc/o Dignity in Dying (DID)181 Oxford StreetLondon W1D 2JTUK

T: +31-(0)20-620-0690


Main contact: Karen Sanders




Key activities: Umbrella organisation of European societies working to secure or protect the rights of individuals to self-determination at the end of their lives. Promotes co-operation and liaison among member societies.


Number of member groups: 20 member societies from 14 European countries.

Countries of member groups: Belgium, Denmark, Finland, France, Germany, Ireland, Italy (2), Luxembourg, Netherlands (3), Norway, Spain, Sweden, Switzerland (3), UK (2).

Groups to which organisation is affi liated: World Federation of Right to Die Societies (WFRtDS).

Revenue

Main sources of funding: World Federation of Right to Die Societies (WFRtDS); member societies.

Right to Die Europe(RtD-E)http://www.rtde.eu

Palliative


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M. Geissler (Project Manager)SPAEN Administrative Offi ceAm Rothenanger 1b85521 RiemerlingGermany

T: +49-6032-9492-438 / +49-89-6283-6807

F: +49-89-6283-6808



Position of main contact: Financial Director



Key activities: European network of sarcoma patient advocacy groups. Raises awareness of sarcomas (including desmoids and GIST) among the public and healthcare stakeholders, works to optimise a pan-European fl ow of information between members, strengthens existing member organisations and new patient groups, and aims to see improvements in the quality of treatment and research for the benefi t of sarcoma patients across the whole of Europe. Membership is open to patient groups across Europe working with sarcoma patients.

Objectives for 2012 onwards: “Partnering with clinicians, researchers, industry and other stakeholders, SPAEN aims to improve the treatment and care of sarcoma patients in Europe. SPAEN: ‘A Better Future For Patients With A Rare Cancer’.”



Countries of member groups: Finland, France (3), Germany (2), Italy (2), Macedonia, Netherlands, Poland (2), Romania, Sweden, Switzerland, UK (2).

Groups to which organisation is affi liated: European Cancer Patient Coalition (ECPC).

Revenue


Pharmaceutical funding: Bayer; MSD/Merck; Novartis; Pfi zer; PharmaMar; Takeda (all totalling €95,000).


Sarcoma Patients EuroNet Association(SPAEN)http://www.sarcoma-patients.eu

Cancer


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Im Moos 479112 Freiburg im BreisgauGermany

T: +49-766-59-44-70



Geographic areas of operation: Europe and the USA.

Key activities: Alliance of seven of the leading European spinal muscular atrophy (SMA) patient groups and research charities dedicated to fi nding a cure for SMA. Aims to act as an information-sharing and grant-giving platform for the European SMA community.



Countries of member groups: France, Germany, Italy, Netherlands, Spain, UK (2).


SMA Europehttp://www.sma-europe.net



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c/o European Respiratory Society49-51 rue de Treves1040 BrusselsBelgium

T: +32-2-238-53-60

F: +32-2-238-53-61


Main contact: Florence Berteletti Kemp


Name of representative in Brussels: Florence Berteletti Kemp


Contact for representative in Brussels: fl [email protected]



Key activities: Partnership between four organisations with a mission to see the implementation of the WHO Framework Convention on Tobacco Control (FCTC). Works to ensure that tobacco control receives political attention at EU level, and promotes tobacco-control information and policy research at EU and national levels.

Key campaigns: Member of the consortium of the ‘Tobacco-Free Europe’ campaign. Supports ‘World No Tobacco Day’ (every May).

Objectives for 2012 onwards: “SFP will continue to contribute to the implementation of the Framework Convention on Tobacco Control (FCTC), to exposure of the tobacco industry, and towards action against the illicit trade of tobacco products.”

Current EU-funded projects: Lead partner in ‘TobTaxy (Making Tobacco Tax Trendy)’, 2010-2013, funded by the Health Programme 2008-2013 of the Executive Agency for Health and Consumers (EAHC).


Number of member groups: 3 partner organisations (2 of which are NGOs) in two European countries.

Countries of member groups: Belgium, UK.


Revenue


Pharmaceutical funding: 2010: Novartis (€5,000). Johnson & Johnson, Novartis, and Pfi zer supply unrestricted educational grants to consortium members of the ‘Tobacco-Free Europe’ campaign.

Main sources of funding: 2010: core funding from 3 members (€154,000); project funding mainly from the European Commission (€214,000).

Smokefree Partnership(SFP)http://www.smokefreepartnership.eu

Public Health


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Suite 2Victoria House10 Brighton RoadRedhillSurrey, RH1 6QZ, UK

T: +44-(0)-1737-231-366

F: +44-(0)-1737-826-658

Email: socialfi [email protected]

Main contact: Tom Gaule

Position of main contact: Secretariat

Name of representative in Brussels: Bernard Jacob

Position of representative in Brussels: Administrateur Stratégique UTE-AIGS




Key activities: European network of social fi rms, social co-operatives, NGOs and organisations that share the aim of creating employment for people with a disability. An annual conference brings together users of mental health services, members, mental health professionals and managers.

Objectives for 2012 onwards: “CEFEC plans to increase the membership, serve it, and become more fi nancially sustainable and infl uential as a European network.”


Number of member groups: Member organisations in 17 European countries.

Countries of member groups: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Finland, Germany, Gibraltar, Greece, Italy, Portugal, Romania, Slovenia, Spain, Switzerland, UK.

Groups to which organisation is affi liated: European Disability Forum (EDF); Mental Health Europe (MHE).

Revenue


Main sources of funding: Membership fees; donations.

Social Firms Europe CEFEChttp://www.socialfi rmseurope.org

Disability


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SAFE Secretariatc/o Stroke House240 City RoadLondonEC1V 2PR, UK

T: +44-(0)207-566-0310

F: +44-(0)207-490-2686


Main contact: Markus Wagner


Name of representative in Brussels: Willy Devriesere

Position of representative in Brussels: SAFE Board Member




Key activities: Supports stroke patient organisations across Europe, promotes prevention and research into stroke, and aims to advance the priority given to stroke and to stroke patients. Aims to infl uence legislation at European Parliament level on behalf of resources to improve stroke prevention and care across Europe.

Key campaigns: Runs ‘European Stroke Awareness Day’ (every May). Supports ‘World Stroke Day’ (every October).

Objectives for 2012 onwards: “SAFE represents a strong patient and carer voice which will call on European governments to take the lead in making stroke prevention a health priority.”

Current EU-funded projects: Partner in ‘European Stroke Research Network (EUSTROKE)’, 2008-2013, funded by the 7th Framework Programme.


Number of member groups: 21 member organisations from 17 European countries

Countries of member groups: Austria, Belgium, Czech Republic, Denmark, Finland, France, Germany, Hungary, Iceland, Italy, Netherlands, Norway (2), Poland, Slovenia, Spain (2), Sweden, UK (3).

Groups to which organisation is affi liated: European Federation of Neurological Associations (EFNA).

Revenue

Pharmaceutical funding: AstraZeneca; MSD; Sanofi -Aventis.

Main sources of funding: Pharmaceutical companies; medical device companies; subscriptions from supporting organisations.

Stroke Alliance for Europe(SAFE)http://www.safestroke.com



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PO Box 288072083 NicosiaCyprus

T: +357-22-319-129

F: +357-22-314-552


Main contact: Dr Androulla Eleftheriou




Key activities: Umbrella organisation of national thalassaemia associations. Supports the development and implementation of effective control programmes, and the establishment of educational programmes, including the training of health professionals and the distribution of educational materials.

Key campaigns: Runs ‘World Thalassaemia Day’ (every May). Supports ‘World Blood Donor Day’ (every June).

Objectives for 2012 onwards: “TIF will focus on three areas: creation of global networks of experts and patients; promotion of haemoglobinopathies on national and European health agendas; and placing thalassaemia and other Hb disorders in the wider context of rare diseases.”



Countries of member groups: Albania, Belgium, Bulgaria (2), Cyprus, France, Germany (2), Greece (2), Italy (7), Luxembourg, Malta, Netherlands, Portugal, Romania, Spain, Turkey (4), UK (3).

Groups to which organisation is affi liated: European Organisation for Rare Diseases (EURORDIS); European Platform for Patients’ Organizations, Science and Industry (EPPOSI); European Public Health Alliance (EPHA); International Alliance of Patients’ Organizations (IAPO).


Revenue


Pharmaceutical funding: 2009: ApoPharma; Novartis Oncology.

Main sources of funding: 2009: pharmaceutical companies; medical device companies; local non-medical businesses; Cyprus government departments; Executive Agency for Health and Consumers (EAHC) (€70,000).

Thalassaemia International Federation(TIF)http://www.thalassaemia.org.cy

Blood Disorders


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Viale Orazio Flacco 2470124 BariItaly

T: +39-(0)80-509-3389 / +1-843-377-0900, ext207

F: +39-(0)80-561-9181 / +1-843-377-0905

Email: nafc@wfi p.org

Main contact: Nancy Muller




Key activities: Patient-centred non-profi t association for people suffering from incontinence and related pelvic-fl oor disorders, and their respective national associations. Provides member associations with up-to-date information, guidelines and educational resources. Seeks international cooperation via lobbying and contact with offi cial bodies and relevant patient advocacy groups.

Key campaigns: WFIP ‘Bill of Patient Rights’.

Objectives for 2012 onwards: “WFIP is launching a mentoring programme to foster new organisations in countries that lack a patient advocacy group dedicated to improving the lives of people living with incontinence.”


Number of member groups: 12 European member associations from 12 European countries.

Countries of member groups: Czech Republic, Denmark, France, Italy, Malta, Netherlands, Poland, Portugal, Romania, Spain, Sweden, UK.

Groups to which organisation is affi liated: European Platform for Patients’ Organizations, Science and Industry (EPPOSI); International Alliance of Patients’Organizations (IAPO); Continence Promotion Committee (CPC) of the International Continence Society (ICS).

World Federation of Incontinent Patients(WFIP)http://www.wfi p.org

Urinary

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