Resource Name: URL:http://www.1in9.org

http://www.11qusa.org17q21.31 Research Project

http://www.1p36dsa.org22q11 Ireland http://www.22q11ireland.org22qcentral.org http://22qcentral.org2q23.org http://2q23.org/4p- Support Group

4th Angel Mentoring Program http://www.4thangel.org5p- Society http://www.fivepminus.orgA Foundation Building Strength

A Place to Remember

A Twist of Fate-ATS

Aarons Ohtahara http://www.ohtahara.org/

About Special Kids

AboutFace International http://aboutface.ca/

AboutFace USA http://www.aboutfaceusa.orgAccelerate Brain Cancer Cure http://www.abc2.org

Accord Alliance

Achalasia 101 http://achalasia.us/http://www.amda-pompe.org

Acoustic Neuroma Association http://anausa.org/Action to Cure Kidney Cancer http://www.ackc.org/

http://www.addisons.org.uk/http://www.accoi.org/

http://www.accrf.org/

List of organizations from the Genetic and Rare Diseases (GARD) Information Center3/12/2015

1 in 9: The Long Island Breast Cancer Action Coalition11q Research and Resource Group http://www.17q21.com/en/

index.php1p36 Deletion Support & Awareness

http://www.4p-supportgroup.org/

http://www.buildingstrength.orgA National Support group for

Arthrogryposis Multiplex Congenita (AVENUES)

http://www.avenuesforamc.com

http://www.aplacetoremember.com/http://www.atwistoffate-ats.com/

http://www.aboutspecialkids.org/

Accelerated Cure Project for Multiple Sclerosis

http://www.acceleratedcure.orghttp://www.accordalliance.org/

Acid Maltase Deficiency Association (AMDA)

Addison's Disease Self Help GroupAdenoid Cystic Carcinoma Organization InternationalAdenoid Cystic Carcinoma Research Foundation

http://www.naadvocacy.org

AFE Foundation http://www.afesupport.orgAHC Association of Iceland http://.www.ahc.isAHC Federation of Europe http://www.ahcfe.euAicardi Syndrome Foundation

AISDSD Support Group http://www.aisdsd.orgAIS-DSD Support Group http://www.aisdsd.org/AKU Society http://www.alkaptonuria.info/AKU Society of North America http://www.akusocietyna.org/Alagille Syndrome Alliance http://www.alagille.orgAlbinism Fellowship http://www.albinism.org.ukALD Life http://www.aldlife.org/

http://aliber.org/

http://www.aanma.org

Alliance for Cryoglobulinemia http://allianceforcryo.org/

Alliance for Lupus Research http://lupusresearch.org/Alopecia Support Group

Alopecia World websiteAlpha-1 Advocacy Alliance

Alpha-1 Association http://www.alpha1.org/

Alpha-1 Awareness UK

Alpha-1 Canada http://www.alpha1canada.caAlpha-1 Foundation

Alpha-1 UK Support Group http://www.alpha1.org.ukAlport Syndrome Foundation

ALS Puerto Rico Support

Alstrom Syndrome International http://www.alstrom.orghttp://www.ahckids.org

http://www.alzdiscovery.org

Advocacy for Neuroacanthocytosis PatientsAdvocacy for Patients with Chronic Illness, Inc.

http://www.advocacyforpatients.org

http://www.aicardisyndrome.org

Alex's Lemonade Stand Foundation

http://www.alexslemonade.org/Alianza Iberoamericana de

Enfermedades Poco FrecuentesAllergy & Asthma Network Mothers of Asthmatics

http://www.alopeciasupport.org/http://www.alopeciaworld.comhttp://www.alpha1advocacy.org

http://www.alpha1awareness.org.uk

http://www.alpha-1foundation.org/

http://www.alportsyndrome.orgAlport Syndrome Hope for the

Cure Foundationhttp://www.hopeforthecure.orghttp://alsprsupportgroup.ning.com/

Alternating Hemiplegia of Childhood Foundation (AHCF)Alveolar Capillary Dysplasia Association

http://www.acd-association.com

Alzheimer’s Drug Discovery Foundation (formerly, Institute for the Study of Aging)

Alzheimer's Association http://www.alz.org

http://www.alzfdn.org

AMC Cancer Research Center http://www.amc.org/AMD Alliance International http://www.amdalliance.org

http://www.aad.org/http://www.aao.org/

http://www.aaomp.org

http://www.aaos.org/

http://www.aapsm.org/

American Acedemy of Pediatrics http://www.aap.orghttp://www.aaksis.org

http://www.aapos.org/

http://www.aasld.org/

http://www.aakp.org/

http://www.aaidd.org

http://www.aarda.org/

American Autonomic Society

http://www.behcets.com

http://www.abta.orgAmerican Cancer Society http://www.cancer.org

http://www.acca.org

http://www.theacpa.org

http://www.acog.org

American Diabetes Association http://www.diabetes.org

American Dietetic Association

American Dystonia Society http://www.dystonia.us/American Epilepsy Society http://www.aesnet.org

Alzheimer's Disease Education and Referral Center (ADEAR)

http://www.nia.nih.gov/alzheimers

Alzheimer's Foundation of America

American Academy of Allergy Asthma and Immunology

http://www.aaaai.org/home.aspx

American Academy of DermatologyAmerican Academy of OphthalmologyAmerican Academy of Oral & Maxillofacial Pathology (AAOMP)American Academy of Orthopaedic SurgeonsAmerican Academy of Podiatric Sports Medicine

American Association for Klinefelter Syndrome Information and SupportAmerican Association for Pediatric Ophthalmology and StrabismusAmerican Association for the Study of Liver DiseasesAmerican Association of Kidney PatientsAmerican Association on Intellectual and Developmental DisabilitiesAmerican Autoimmune Related Diseases Association (AARDA)

http://americanautonomicsociety.org/American Behcet's Disease

AssociationAmerican Brain Tumor Association

American Childhood Cancer OrganizationAmerican Chronic Pain Association (ACPA)American College of Obstetricians and Gynecologists (ACOG)

http://www.eatright.org/Public/

http://www.afsafund.org/

American Foundation for the Blind http://www.afb.org/http://www.gastro.org/patient

American Hair Loss Association http://americanhairloss.orghttp://www.achenet.org

http://www.ahaf.org/

American Heart Association http://www.heart.org/

http://www.americanhs.org

http://www.aicr.org

American Kidney Fund, Inc. http://www.kidneyfund.orgAmerican Liver FoundationAmerican Lung Association http://www.lung.org/

http://www.macular.org/

http://www.amensupport.org/

http://aofas.org/

http://www.aocd.org/

http://www.apfed.org

http://www.apma.org/

American Pregnancy Association

American RSD Hope Group http://www.rsdhope.orghttp://www.ascaa.org

American SIDS Institute http://sids.org/American Skin Association, Inc. http://www.americanskin.org

http://www.sleepapnea.orgAmerican Sleep Association

American Fibromyalgia Syndrome Association, Inc.

American Gastroenterological Association

American Headache Society Committee for Headache Education (ACHE)American Health Assistance FoundationAmerican Hearing Research Foundation

http://www.american-hearing.org

American Hemochromatosis Society, Inc.

American Institute for Cancer Research

http://www.liverfoundation.org/

American Macular Degeneration FoundationAmerican Multiple Endocrine Neoplasia SupportAmerican Orthopaedic Foot & Ankle SocietyAmerican Osteopathic College of DermatologyAmerican Parkinson Disease Association

http://www.apdaparkinson.org/

American Partnership For Eosinophilic DisordersAmerican Podiatric Medical Association, Inc.

http://www.americanpregnancy.org

American Sickle Cell Anemia Association

American Sleep Apnea Association http://

www.sleepassociation.org/

http://www.deafchildren.org/

http://www.asrm.org

http://www.asha.org/

American Stroke Association

http://www.asap.org

American Thyroid Association http://www.thyroid.org

American Urogynecologic Society http://www.augs.org/

American Uveitis Society http://www.uveitissociety.org/

Ameriface http://www.ameriface.orgAmniotic Band Syndrome

Amputee Coalition of America

Amyloidosis Australia, Inc.

Amyloidosis Foundation http://www.amyloidosis.org/

Amyloidosis Support Groups Inc.

http://www.alsa.org

http://www.als.ca

http://cureanca.com/

http://www.aissg.org/

Angelman Syndrome Foundation http://www.angelman.org/

Angioma Alliance

Aniridia Foundation International http://www.aniridia.netAnnabelle's Challenge

American Society for Deaf Children (ASDC)

American Society for Reproductive Medicine

American Speech-Language-Hearing Association

http://www.strokeassociation.org/

American Syringomyelia Alliance Project, Inc.

American Urologic Disease Foundation

http://www.auafoundation.org/

American Vitiligo Research Foundation

http://www.avrf.org/index.htm

http://www.amnioticbandsyndrome.com/http://www.amputee-coalition.org/index.htmlhttp://www.amyloidosis.com.au/

http://www.amyloidosissupport.com

Amyotrophic Lateral Sclerosis Association (ALSA)Amyotrophic Lateral Sclerosis Society of CanadaANCA Associated Vasculitis FoundationAndrogen Insensitivity Syndrome Support Group

http://www.medhelp.org/www/ais

Androgen Insensitivity Syndrome Support Group UK

http://www.angiomaalliance.org

http://www.annabelleschallenge.org

Anorchidism Support Group http://www.asg4u.org/http://www.adaa.org

Any Baby Can, Inc. http://anybabycansa.orghttp://www.aosupport.org/

APBD Research Foundation http://www.apbdrf.orgApert International, Inc.

Aphasia Hope Foundation http://www.aphasiahope.org/

http://www.aamds.org/

http://www.aaomf.org

APS Foundation of America, Inc. http://www.apsfa.org/

http://www.parseghian.org

Arachnoid Cyst Support Group NZ

http://www.arc-wisconsin.org

ARPKD/CHF Alliance http://www.arpkdchf.orgArthritis Foundation http://www.arthritis.org

Arthrogryposis Group http://tagonline.org.ukhttp://www.amcsupport.org

http://www.ashermans.org

www.acelaweb.org

http://asedh.org

www.asociacionela.org.ar/

Asociación Española de ELA http://www.adelaweb.com/

Anxiety and Depression Association of America

AOSupport: Uniting Families Affected by Adams-Oliver Syndrome

http://www.apert-international.org

Aplastic Anemia & MDS International Foundation, Inc. Aplastic Anemia and Myelodysplasia

http://www.aamac.ca/index.html

APLASTIC ANEMIA AND OMID'S MISSION FOUNDATION

Ara Parseghian Medical Research FoundationArachnoid Cyst Awareness Network

http://arachnoidcystawareness.com/ http://www.arachnoidcyst.org.nz/

Arachnoiditis Sufferers Action and Monitoring Society (ASAMS)

http://www.arachnoiditis.info/index.html

Arc Wisconsin Disability Association, Inc.ARM (Advancement of Research for Myopathies)

http://www.hibm.org/arm/home

Arthrogryposis Multiplex Congenita Support Inc.Asherman's Syndrome Int'l Support GroupAsociación Colombiana de Esclerosis Lateral AmiotróficaAsociación de Charcot-Marie-Tooth

http://www.cmtausa.org/index.php?option=com_content&view=category&id=55&Itemid=244Asociación de Síndrome de

Ehlers-Danlos e Hiperlaxitud Sede CentralAsociación ELA Argentina (ALS Association of Argentina)

Asociación Española de Ictiosis http://ictiosis.org

Asociación Española de Pediatría http://www.aeped.eshttp://www.asebewi.org/

http://ae3com.eu/

www.galactosemia.es

Asociación Piel de Mariposa http://www.debra.es

http://www.xfragil.net

Asociación X Frágil Colombia

http://www.ahany.org

http://www.ela-asso.com

http://www.acds.org

http://www.theaftd.org/

http://www.agsdus.org

http://www.agsd.org.uk/

http://www.macula.org

http://www.amp.orghttp://www.amend.org.uk

http://www.asbah.org

Asociación Española del Síndrome de Beckwith-WiedemannAsociación Española para el Estudio de los Errores Congénitos del MetabolismoAsociación Española para la GalactosemiaAsociacion Española Síndrome de Noonan

http://asociacionnoonan.wordpress.comAsociación Pequeños Gigantes de

Colombiahttp://www.pequenosgigantesdecolombia.com/

Asociación Síndrome de Down de la República Argentina

http://www.asdra.org.ar/que-es-el-sindrome-de-down/

Asociación Síndrome X-Frágil de MadridAsociación Todos Unidos Enfermedades Raras Uruguay

http://www.enfermedadesrarasuruguay.org.uy/http://www.asociacionxfragilcolombia.org/#!formulario/c10feAsperger Syndrome and High

Functioning Autism AssociationAssociation Européenne contre les Leucodystrophies (ELA)Association for Children with Down Syndrome, Inc. Association for Frontotemporal DementiasAssociation for Glycogen Storage Disease Association for Glycogen Storage Disease UK

Association for Macular Disease, Inc.Association for Molecular PathologyAssociation for Multiple Endocrine Neoplasia Disorders (AMEND)

Association for Spina Bifida & HydrocephalusAssociation for the Bladder Exstrophy Community

http://www.bladderexstrophy.com

http://www.genetic.org

Association P.A.V.E.L. http://www.asociatiapavel.roAssociation Paratonnerre

http://www.ring14.org

A-T Children's Project http://www.atcp.org

Ataxia UK http://www.ataxia.org.uk

http://www.addresources.orgAustralasian Genetic Alliance

http://www.allergy.org.au/

http://www.taag.org.au/

http://www.alds.org.au/

Autism Science Foundation

Autism Society of America http://www.autism-society.org

Autism Speaks http://www.autismspeaks.orgAutoimmune Encephalitis Alliance https://aealliance.org/Autoinflammatory Alliance http://www.nomidalliance.orgAVM Survivors' Network http://www.avmsurvivors.org/Baby's First Test http://www.babysfirsttest.orgBald Girls Do Lunch Inc

http://www.bardetbiedl.org/

Barth Syndrome Foundation

http://www.bdsra.org/

Association for X and Y Chromosome VariationsAssociation of Gastrointestinal Motility Disorders, Inc. (AGMD)

http://www.agmd-gimotility.org

Association of Genetic Support of Autralasia, Inc.

http://www.agsa-geneticsupport.org.au/

Association of Peyronie's Disease Advocates

http://www.peyroniesassociation.org/http://www.associationparatonnerre.org/medias/files/newsletter-2-en-web-jan2013.pdfAssociazione Internazionale Ring

14 Per La Ricerca Sulle Malattie Neurogenetiche

Attention Deficit Disorder Resources http://

www.australasiangeneticalliance.org.au/Australasian Society of Clinical

Immunology and AllergyAustralian Arthrogryposis Group (TAAG), Inc.Australian Leukodystrophy Support GroupAustralian Trimethylaminuria Foundation

http://www.tmaufoundation.org.auhttp://www.autismsciencefoundation.org

http://www.baldgirlsdolunch.org

Bardet Biedl Syndrome Family Association

http://www.barthsyndrome.orgBasal Cell Carcinoma Nevus

Syndrome Life Support Networkhttp://www.gorlinsyndrome.org

Batten Disease Support and Research Association (BDSRA)

BCCNS Life Support Network http://www.bccns.org/Beautiful You MRKH Foundation

http://www.ncbegin.org

Behcet's Organisation Worldwide http://www.behcets.org/Bell's Palsy Network http://www.bellspalsy.net/

Ben's Friends http://www.bensfriends.org/http://www.beyondbatten.org/

BHD Foundation http://www.bhdsyndrome.org

http://www.birthdefects.org/

http://www.bcan.org/http://www.bpes.org.uk

Bloom's Syndrome Foundation

http://www.bluefaery.org

BOKS vzw http://www.boks.beBoomer Esiason Foundation http://www.esiason.orgBrachial Plexus Palsy Foundation

Brain Foundation

Brain Injury Association http://www.biausa.org

Breast Cancer Options

http://www.beautifulyoumrkh.org/Info.htmlBeckwith Wiedemann Support

Group (UK)http://www.bws-support.org.uk/

Beckwith-Wiedemann Children's Foundation

http://www.beckwith-wiedemannsyndrome.org

BEGINNINGS For Parents of Children Who Are Deaf or Hard of Hearing, Inc.

Benign Essential Blepharospasm Canadian Research Foundation

http://www.blepharospasm.ca/

Benign Essential Blepharospasm Research Foundation

http://www.blepharospasm.org

Beyond Batten Disease Foundation

Biotinidase Deficiency Family Support Group

http://biotinidasedeficiency.20m.com/Birth Defect Research for

Children, Inc.Bladder Cancer Advocacy NetworkBlepharophimosis, Ptosis, Epicanthus Inversus Family NetworkBloom's Syndrome Association, Inc

http://www.bloomssyndromeassociation.org/http://www.bloomssyndrome.org/

Blue Faery: the Adrienne Wilson Liver Cancer Association

http://www.brachialplexuspalsyfoundation.org/http://www.brainaustralia.org.au/

Brain Tumor Foundation for Children, Inc.

http://www.braintumorkids.org

Breast Cancer Network of Strength

http://www.networkofstrength.orghttp://www.breastcanceroptions.org

Breast Friends http://www.breastfriends.org

Breathtakers (UK)

Bright Focus Foundation http://www.brightfocus.org/Bright Pink http://www.brightpink.org

http://www.bad.org.ukBrittle Diabetes Foundation http://www.bdtype1.com/

C3: Colorectal Cancer Coalition

CADASIL-Together We Have Hope

CAH Support Group http://www.livingwithcah.com

http://www.ccpkuad.org

http://thecasn.org/

Canadian Diabetes Association http://www.diabetes.ca/http://www.cdss.ca

Canadian Hemophilia Society http://www.hemophilia.cahttp://cipo.ca

Canadian Marfan Association http://www.marfan.ca

http://mensociety.ca/

http://www.raredisorders.ca/

http://www.mpssociety.ca

Canavan Foundation

Canavan Research Foundation http://www.canavan.org

Breath of Hope: Congenital Diaphragmatic Hernia (CDH) Awareness

http://www.breathofhopeinc.com

http://www.breathtakers.org.uk

British Association of DermatologistsBrown-Vialetto-Van Laere International (BVVL International)

http://www.bvvlinternational.orghttp://www.FightColorectalCancer.orghttp://home.earthlink.net/~cadasil/

California Coalition for PKU and Allied DisordersCanadian Amyloidosis Support NetworkCanadian Angelman Syndrome Society

http://www.angelmancanada.org

Canadian Association for Williams Syndrome

http://caws.sasktelwebhosting.com/

Canadian Down Syndrome Society Canadian Fanconi Anemia Research Fund

http://www.fanconicanada.org/en/

Canadian Immunodeficiencies Patient Organization (CIPO)

Canadian Multiple Endocrine Neoplasia Society, Inc.Canadian Organization for Rare DisordersCanadian Pulmonary Fibrosis Foundation

http://www.canadianpulmonaryfibrosis.ca/Canadian Society for

Mucopolysaccharide and Related Diseases Inc. (Canadian MPS Society)

http://www.canavanfoundation.org

Canavan Research Illinois

Cancer Hope Network

http://cisncancer.org/

Cancer Support Community

Cancer.net http://www.cancer.net/CancerCare http://www.cancercare.org/Cantu Syndrome Interest Group http://cantu-syndrome.org/

http://www.longqt.org/

Cardiomyopathy Association

http://www.cmaa.org.au/

Caring for Carcinoid Foundation

Caring for the Caregiver

Caring Voice Coalition,Inc, http://www.caringvoice.orghttp://www.morquio.com/

Cavernoma Alliance UK http://www.cavernoma.org.ukCCARE Lynch Syndrome http://www.fightlynch.org/CDG Family Network http://www.cdgs.comCDH UK http://www.cdhuk.co.uk/CDKL5 Canada http://www.cdkl5canada.ca/

CDKL5 UK http://www.cdkl5uk.org

CdLS Foundation http://www.cdlsusa.org/CdLS World http://www.cdlsworld.orgCeliac Sprue Association USA, Inc. http://www.csaceliacs.orgCenter for Jewish GeneticsCenter for Loss in Multiple Birth http://www.climb-support.org

http://www.cvvd.org/http://www.cpirf.org

Cerebral Palsy Network

CFC International http://cfcsyndrome.org/http://www.cfids.org

CGD Society http://www.cgdsociety.org

http://www.canavanresearch.orghttp://www.cancerhopenetwork.org/

Cancer Information & Support Network

http://www.cancersupportcommunity.org/

Cardiac Arrhythmias Research and Education Foundation, Inc.

http://www.cardiomyopathy.org

Cardiomyopathy Association Australia

http://www.caringforcarcinoid.org/http://caringforthecaregiver.org/

Carol Ann Foundation & International Morquio Organization

http://www.jewishgenetics.org

Center for Parent Information and Resources

http://www.parentcenterhub.org/

Centers for Vulvovaginal DisordersCerebral Palsy International Research Foundation

http://thecpnetwork.org/megalencephaly.html

CFIDS Association of America, Inc.

http://www.chadd.org

Chagas Disease Foundation http://www.chagasfound.org/Charcot-Marie-Tooth Association

http://www.cmt.org.au/

CHARGE Syndrome Foundation

Charles E. Holman Foundation http://www.thecehf.org/

Charley's Fund, Inc. http://www.charleysfund.org

http://www.chelseashope.org/

Cherab Foundation

CHERUBS http://www.cherubs-cdh.orghttp://www.csfinfo.org/

http://www.apraxia-kids.org

http://www.climb.org.uk

http://www.csma.org.ua

http://www.classkids.org

http://cnsfoundation.org/

Children’s PKU Network http://www.pkunetwork.org/Children's Alopecia Project, Inc.

http://www.cbtf.orgChildren's Brittle Bone Foundation http://www.cbbf.org/

http://www.childrenscbf.org

http://www.ccakids.com/http://www.cdhnf.org/

CHADD (Children & Adults with Attention-Deficit Hyperactivity Disorder)

http://www.charcot-marie-tooth.org/

Charcot-Marie-Tooth Association of Australia

http://www.chargesyndrome.org

CHASER (Congenital Heart Anomalies -- Support, Education & Resources, Inc.)

http://www.csun.edu/~hcmth011/chaser/contact.html

Chelsea's Hope: Lafora Children Research Fund

http://www.cherabfoundation.org

Chiari & Syringomyelia Foundation, Inc.Chicago Center for Jewish Genetic Disorders

http://www.jewishgeneticscenter.orgChildhood Apraxia of Speech

Association of North America (CASANA)Children Living with Inherited Metabolic Diseases (CLIMB) Children with Spinal Muscular AtrophyChildren’s Liver Association for Support ServicesChildren’s Neurobiological Solutions Foundation

http://www.childrensalopeciaproject.orgChildren's Brain Tumor

FoundationChildren's Cancer & Blood FoundationChildren's Cardiomyopathy Foundation

http://www.childrenscardiomyopathy.org/Children's Craniofacial

Association Children's Digestive Health & Nutrition FoundationChildren's European Mitochondrial Disease Network

http://www.emdn-mitonet.co.uk

http://www.cureGSD.org

Children's Glaucoma Foundation

http://www.classkids.org/

http://www.cncfhope.org/

http://www.cscfkids.org

https://www.csdf.org/

Chordoma Foundation

Chordoma Support Group

http://www.choroideremia.ca/

http://choroideremia.org/

http://www.c22c.org

http://www.c22c.org/

http://www.c22c.orghttp://chromosome9.org

Chromosome 9pminus Network http://www.9pminus.orgChromosome Disorder Outreach

http://www.cfids.org

http://www.cgd.org.uk/

http://www.cgdsociety.org/

http://www.cllinfogroup.org

Children's Fund for Glycogen Storage Disease Research, Inc.Children's Gaucher Research Fund

http://www.childrensgaucher.orghttp://www.childrensglaucoma.com

Childrens Interstitial Lung Disease (ChILD) Foundation

http://www.child-foundation.com

Children's Liver Association for Support Services (C.L.A.S.S.)Children's Liver Disease Foundation

http://www.childliverdisease.org/

Children's Neuroblastoma Cancer FoundationChildren's Sickle Cell Foundation, Inc.Children's Skin Disease Foundation

http://www.chordomafoundation.org/http://www.chordomasupport.org

Choroideremia Research Foundation Canada, Inc.Choroideremia Research Foundation, Inc.Christopher and Dana Reeve Foundation

http://www.christopherreeve.org

Chromosome 18 Registry & Research Society

http://www.chromosome18.org/

Chromosome 22 Central - LatinoaméricaChromosome 22 Central - Main OfficeChromosome 22 Central - US OfficeChromosome 9 Disorder Advocates

http://www.chromodisorder.orgChronic Fatigue and Immune

Dysfunction Syndrome Association of America, Inc. Chronic Granulomatous Disease Association, Inc.

http://www.cgdassociation.org/

Chronic Granulomatous Disorder Research Trust (CGD)Chronic Granulomatous Disorder SocietyChronic Lymphocytic Leukemia Information Group

http://www.cssassociation.org

http://www.carfintl.org

CIDPUSA Foundation http://www.cidpusa.org

http://www.cqscc.org

http://www.CUREepilepsy.org

CJD Aware! http://www.cjdaware.comCJD Voice

http://www.preventsma.orgCleft Palate Foundation http://www.cleftline.org/

ClinicalTrials.gov

Clot Connect http://www.clotconnect.org/

CLOVES Syndrome Community

CLOVES Syndrome Foundation http://clovesfoundation.org/http://www.caregivernews.org

CMT United Kingdom http://www.cmt.org.uk

CMTC http://www.cmtc.nlCMTC-OVM

Coalition Duchenne

Coalition for Pulmonary Fibrosis http://www.coalitionforpf.org/

Coalition for Usher Syndrome

http://www.coatsdisease.org

Churg Strauss Syndrome AssociationCicatricial Alopecia Research Foundation (C.A.R.F.)

Cincinnati Center for Eosinophilic Disorders

http://www.cincinnatichildrens.org/service/c/eosinophilic-disorders/default/Cincinnati Children's Hospital -

HLHhttp://www.cincinnatichildrens.org/service/h/hlh/about/Circadian Sleep Disorders

Networkhttp://www.circadiansleepdisorders.org/Citizens for Quality Sickle Cell

Care-SCDAA-Northern, CT Chapter, Inc.Citizens United for Research in Epilepsy

http://creativegumbo.net/cjdvoice/

Claire Altman Heine Foundation, Inc.

http://www.clinicaltrials.gov/ct2/results?cond=%22Acanthocheilonemiasis%22

http://www.clovessyndrome.org/

C-Mac Informational Services/Caregiver News [For Alzheimer's-Type Dementia Caregivers]

http://cmtc.nl/index.php?lang=en&Itemid=105http://www.coalitionduchenne.org

Coalition for Heritable Disorders of Connective Tissue

http://www.chdct2.org/index.htm

http://www.usher-syndrome.org/

Coats Disease Information for Parents

http://clsf.info/

Cohen Syndrome Association http://cohen-syndrome.org/http://www.cgaicc.com

Colon Cancer Alliance http://www.ccalliance.org

Compassionate Friends

http://www.cah.org.nz/

http://www.cchsnetwork.org/

http://tchin.org/

http://www.tchin.org

http://www.congenitalhi.org/

http://www.csidinfo.com

Conquer Chiari

Conversations! http://www.ovarian-news.orgCooley's Anemia FoundationCOPD FoundationCORE http://www.corecharity.org.uk

http://www.cornea.org

Corneal Dystrophy Foundation

http://www.cdlsusa.org

Coffin-Lowry Syndrome Foundation

Collaborative Group of the Americas in Inherited Colorectal Cancer (CGA)Colorectal Cancer Association of Canada

http://www.colorectal-cancer.cahttp://www.compassionatefriends.orgCongenital Adrenal Hyperplasia

Education and Support Networkhttp://www.congenitaladrenalhyperplasia.orgCongenital Adrenal Hyperplasia

Research Education and Support (CARES) Foundation

http://www.caresfoundation.org

Congenital Adrenal Hyperplasia Support Group of NZ or CAHNZ TrustCongenital Central Hypoventilation Syndrome (CCHS) Family Support Network Congenital Heart Anomalies, Support, Education, & Resources, Inc. (CHASER, Inc.)

http://www.csun.edu/~hcmth011/chaser/chaser-news.html

Congenital Heart Information NetworkCongenital Heart Information Network (C.H.I.N.)Congenital Hyperinsulinism InternationalCongenital Sucrase-Isomaltase Deficiency (CSID) Parent Support Group

http://www.conquerchiari.org/index.htmlhttp://www.cooleysanemia.orghttp://www.copdfoundation.org

Cornea Research Foundation of America

http://www.cornealdystrophyfoundation.orgCornelia de Lange Syndrome

Foundation, Inc.

Corpus Callosum Research Program

http://emotion.caltech.edu/agcc/index.html

Cortical Foundation http://cortfoundation.org/

http://www.cappskids.org

http://www.cjdfoundation.org/

Crigler-Najjar Association http://www.criglenajjar.comhttp://www.ccfa.org

CSID Cares http://csidcares.org/http://curecmd.org/

Cure Dystonia Now

Cure HHT http://curehht.org/

Cure SMA http://www.curesma.orgCURED FoundationCureDuchenne http://www.cureduchenne.org

http://www.psp.org/

http://csrf.net

Cutaneous Lymphoma Foundation http://www.clfoundation.org/Cutis Laxa Internationale http://asso.orpha.net/cutislax/

http://www.cvsaonline.org

Cystic Fibrosis Foundation http://www.cff.org

Cystic Fibrosis Research, Inc. http://www.cfri.org

Cystinosis Foundation

Cystinosis Research Foundation

Cystinosis Research Network http://www.cystinosis.org/Cystinuria Support Network http://www.cystinuria.com/

Dandy-Walker Alliance, Inc. http://www.dandy-walker.org

Daniella Maria Arturi Foundation

Danon Disease Support Network

DanonDisease.org http://www.danondisease.org/

Costello Syndrome Family Network

http://www.costellosyndromeusa.org/Craniofacial Foundation of

Americahttp://www.craniofacialfoundation.orgCraniosynostosis and Positional

Plagiocephaly Support IncCreutzfeldt-Jakob Disease Foundation, Inc

Crohn's & Colitis Foundation of America

Cure CMD - Congenital Muscular Dystrophy

http://www.curedystonianow.org/index

http://curedfoundation.org/site/

CurePSP (Society for Progressive Supranuclear Palsy)Cushing's Support and Research Foundation

Cyclic Vomiting Syndrome Association

http://www.cystinosisfoundation.org/http://www.cystinosisresearch.org

Dancing Eye Syndrome Support Trust

http://www.dancingeyes.org.uk

http://diamondblackfananemia.orghttp://danon-disease-support.webs.com/

DebRA Chile http://debrachile.cldebra Costa Rica http://www.debracr.orgDebRA International

http://www.dbsalliance.org

http://www.dtrf.org/

http://www.behcet.de

Developmental Delay Resources http://www.devdelay.org/http://www.devdelay.org

Devic's Disease UK http://www.devic.org.uk/

Diabetes Hands Foundation

Diabetes New Zealand http://www.diabetes.org.nz/

http://www.trisomy16.org/

DNAandU.org http://www.dnaandu.org/

Down EspañaDown Syndrome Alabama

http://www.dsaa.info

http://www.dsaatl.org

http://www.dsagsl.org

http://downsyndromeinfo.org/

http://www.dsrtf.org/

Down Syndrome: Health Issues http://www.ds-health.com/http://www.dslrf.org

Dravet Syndrome Foundation

Dravet.org http://dravet.org/

http://www.debra-international.org/

Depression and Bipolar Support AllianceDesmoid Tumor Research FoundationDeutsches Register Morbus Adamantiades-Behçet eV

Developmental Delay Resources (DDR)

Diabetes Action Research and Education Foundation

http://www.diabetesaction.orghttp://www.diabeteshandsfoundation.org

Diamond Blackfan Anemia and You

http://www.diamondblackfananemia.com/Diamond Blackfan Anemia

Foundation, Inc.http://www.dbafoundation.org/

Disorders of Chromosome 16 Foundation

Doose Syndrome Epilepsy Alliance

http://www.doosesyndrome.org/http://www.sindromedown.net/http://www.downsyndromealabama.orgDown Syndrome Association of

AcadianaDown Syndrome Association of AtlantaDown Syndrome Association of Greater St. LouisDown Syndrome Information AllianceDown Syndrome Research and Treatment Foundation

Dr. Susan Love Research Foundation http://

www.dravetfoundation.org/

Dubowitz Syndrome Family Support

http://www.dubowitzsyndrome.net

Duchenne Connect

Dup15q Alliance http://www.dup15q.org/Dysautonomia Foundation, Inc

Dysautonomia International

Dysautonomia Support Network

http://www.dynainc.org/

http://www.debra.org

http://www.debra.org/espanol

EB Medical Research Foundation http://www.ebkids.org/Ebstein's Anomaly Foundation

ECD Global Alliance

EDS Today http://www.edstoday.orghttp://www.edfnz.org.nz

http://www.ednf.orgEhlers-Danlos Support UK http://www.ehlers-danlos.org

Ehlers-Danlos Syndrome Network

http://www.niams.nih.gov

Ellie White FoundationEmmanuel's Foundation

Encephalitis Global Inc.

Encephalitis Ireland

Encephalitis Society http://www.encephalitis.info/

Endometriosis Association

Dubowitz Syndrome Family Support Network

http://www.ric.edu/sherlockcenter/dsyndrome/https://www.duchenneconnect.org

http://www.familialdysautonomia.org/http://www.dysautonomiainternational.org/http://www.supportdysautonomia.org/Dysautonomia Youth Network of

AmericaDystonia Medical Research Foundation

http://www.dystonia-foundation.org

Dystrophic Epidermolysis Bullosa Research AssociationDystrophic Epidermolysis Bullosa Research Association of America

http://www.ebsteinsanomaly.org/http://www.erdheim-chester.org

Ehlers Danlos Foundation of New ZealandEhlers Danlos National Foundation

http://www.ehlersdanlosnetwork.orgEl Instituto Nacional de Artritis y

Enfermedades Musculoesqueléticas y de la Piel (NIAMS) http://

elliewhitefoundation.org/http://www.EmmanuelsFoundation.orghttp://www.encephalitisglobal.orghttp://www.encephalitisireland.ie/

http://www.endometriosisassn.org

Energy 4 a Cure Foundation

Ependy Parents http://ependyparents.org/EpendyKids http://ependykids.com/

http://www.ebkids.org

Epilepsy Action https://www.epilepsy.org.uk/

Epilepsy Foundation

ErfocentrumErythromelalgia Association

http://www.ECAware.org

http://www.euro-ataxia.eu/

EuroGentest http://www.eurogentest.org/EuroMX Consortium Registry http://www.euromrx.com/

http://www.eamda.net

http://11q.chromosome11.eu/

European LAM Patient Federation

http://www.enerca.org

http://www.eurordis.org

Evanosky Foundation

everyminute.org http://www.everyminute.orgEye on Vision Foundation http://eyeonvision.org/

http://www.rvclresearch.org/index.php

Epidermolysis Bullosa (EB) Center http://www.cincinnatichildrens.org/svc/alpha/e/epidermolysis-bullosa/Epidermolysis Bullosa Medical

Research Foundation

http://www.epilepsyfoundation.org/

Epilepsy Support Network of Orange County

http://www.EpilepsySupportNet.orghttp://www.erfocentrum.nl/newhttp://www.erythromelalgia.org

Esophageal Cancer Awareness Association, Inc.Euro-Ataxia (European Federation of Hereditary Ataxias)

European Alliance of Neuromuscular Disorders AssociationsEuropean Chromosome 11 NetworkEuropean Federation of Autonomic Nervous System Societies

http://www.efasweb.com/efas/http://www.europelamfederation.org/European Network for Rare and

Congenital Anaemias (ENERCA)European Skeletal Dysplasia Network

http://www.esdn.org/eug/Home

EURORDIS Plateforme Maladies Rares

http://www.evanoskyfoundation.org

Evans Syndrome Community Network

http://www.evanssyndrome.net/

EveryLife Foundation for Rare Diseases

http://www.everylifefoundation.org/

http://www.fabry.orghttp://www.faces-cranio.org/

Facial Paralysis Foundation

http://www.fdhope.org

http://www.fdnow.org

Families of SMA http://www.fsma.org/http://www.curesma.ca/

http://www.caregiver.org

Family Connect

Family Empowerment Network

http://www.frcd.org

Family Support Network

Family Voices in Oklahoma http://OKVoices.orgFamily Voices of California

http://www.fanconi.org

Fat Disorders Research Society http://www.fatdisorders.org

http://fadepof.org.ar/contacto

http://www.fecoer.org

http://www.metabolicos.es/

http://www.fedeal.org/

http://www.asem-esp.org

http://www.xfragil.org/

http://fepepco.blogspot.com/

Fetal Hope Foundation http://www.fetalhope.orgFEVR.net http://www.fevr.net/

Fabry Support & Information GroupFACES: The National Craniofacial Association

http://www.facialparalysisfoundation.org/Familial Dysautonomia Hope

FoundationFamilial Dysautonomia Now Foundation (FD NOW)Familias de la Atrofia Muscular Espinal

http://www.fsma.org/FSMACommunity/understandingsma/spanishunderstandingbook/

Families of Spinal Muscular Atrophy CanadaFamily Caregiver Alliance/ National Center on Caregiving

http://www.familyconnect.org/Family Connect: for parents of

children with visual impairmentshttp://www.familyconnect.org/parentsitehome.asphttp://www.pregnancyandalcohol.orgFamily Resource Center on

Disabilitieshttp://www.familysupportnetwork.org/http://www.familyvoicesofca.org

Fanconi Anemia Research Fund, Inc (FARF)

Federación Argentina de Enfermedades Poco FrecuentesFederación Colombiana de Enfermedades RarasFederación Española de Enfermedades Metabólicas HereditariasFederación Española de las Asociaciones de LinfedemaFederación Española de las Enfermedades NeuromuscularesFederación Española del Síndrome X FrágilFederación Peruana de Enfermedades Raras

FG Syndrome Family Alliance http://www.fgsyndrome.org/Fibrolamellar Cancer FoundationFibromyalgia Association UK http://www.fmauk.orgFibromyalgia Network http://www.fmnetnews.com

Fibrosing Mediastinitis

Fibrous Dysplasia Foundation, Inc.Fight ALD http://www.fightald.orgFightSMA/Andrew's Buddies http://www.fightsma.orgFirst Candle/SIDS Alliance http://www.firstcandle.org

FMD Chat http://www.fmdchat.orgFMF Montreal.org http://www.fmfmontreal.org/FND Hope http://fndhope.org/

FOCUS Families http://www.focusfamilies.org

http://www.focusoncll.org

http://www.fodsupport.org

http://www.facingourrisk.org

Foundation Fighting Blindness http://www.blindness.org

http://www.fnms.net

http://www.fpwr.org/

Foundation for Retinal Research http://www.tfrr.org/

http://www.duchennemd.orgFRAXA Research Foundation http://www.fraxa.org

http://www.fspsg.org

http://www.fsrgroups.org/

Friedreich's Ataxia Parents' Grouphttp://www.curefa.org/

Friends of Autism, Inc.

http://www.fibrofoundation.org/

http://www.fibrosing-mediastinitis.com/http://www.fibrousdysplasia.org

Floating Harbor Syndrome Support Group

http://www.floatingharborsyndromesupport.com/

Focus On Chronic Lymphocytic LeukemiaFOD (Fatty Oxidation Disorder) Family Support GroupFORCE: Facing Our Risk of Cancer Empowered

Foundation for Angelman Syndrome Therapeutics

http://www.cureangelman.org/

Foundation for Children with Atypical Hemolytic Uremic Syndrome

http://www.atypicalhus.ning.com/

Foundation for Ichthyosis and Related Skin Types (FIRST)

http://www.firstskinfoundation.org/

Foundation for Nager and Miller SyndromesFoundation for Prader-Willi Research

Foundation for Sarcoidosis Research

http://www.stopsarcoidosis.org

Foundation to Eradicate DuchenneFreeman-Sheldon Parent Support GroupFreeman-Sheldon Research Group, Inc.

http://www.faparents.org/fapg/Friedreich's Ataxia Research

Alliance (FARA)http://www.friendsofautism.org

Friends of ET Research

Friends of FSH Research http://www.fshfriends.org/http://www.friendsoflks.com

http://www.ftdsupport.com

http://www.ftlda.org/

FSH Society, Inc. http://www.fshsociety.orgFSHD Global Research Foundation http://www.fshdglobal.org/

http://www.fcsd.org/es

Fundación ACAR

Fundación ALPEhttp://angiopediatria.com.co/

http://www.fundame.net

Fundación Cromos

Fundación Geiser

Fundación Magar

http://www.fundacionela.com

FVL Thrombophilia Support Page http://www.fvleiden.org/Galactosemia Foundation http://www.galactosemia.orgGalactosemia Support Group

http://www.geeps.co.uk/

http://www.gbs-cidp.orgGenetic AllianceGenetic Interest Group http://www.gig.org.uk

http://www.gmdi.org/

Genetic Skin Disease Center

http://www.gsnv.org.auGenetics Home Reference (GHR)

Georgia PKU Connect http://www.georgiapku.orgGetty Owl Foundation http://www.gettyowl.org

http://www.friendsofetresearch.org

Friends of Landau-Kleffner Syndrome (FOLKS)Frontotemporal Dementia Caregiver Support CenterFrontotemporal Lobar Degeneration Association (FTLDA)

Fundació Catalana Síndrome de Down

http://acondroplasia.jimdo.comhttp://www.fundacionalpe.org/Fundación Angiopediatría

ColombiaFundación Atrofia Muscular Espinal

http://www.fundacioncromos.orghttp://www.fundaciongeiser.org/

http://www.acondroplasia.com/index2.phpFundación Para la Investigación

de la Esclerosis Lateral Amiotrófica

http://www.galactosaemia.org/

Gastroparesis and Dysmotilities Association (GPDA)

http://www.digestivedistress.com/main/page.php?page_id=1Gastroschisis Exomphalos

Extrophies Parents SupportGBS/CIDP Foundation International http://

www.geneticalliance.org/Genetic Metabolic Dietitians International

http://dermatology.stanford.edu/contact/Genetic Support Network of

Victoria http://ghr.nlm.nih.gov/condition=abetalipoproteinemia

GiGi's Playhouse http://gigisplayhouse.org/

GIST Cancer Research Fund http://www.gistinfo.org/

GIST Support International http://www.gistsupport.orgGlaucoma Research Foundation http://www.glaucoma.org

Global CDHhttp://www.thegfpd.org

http://globalgenes.org/

http://www.goldinfo.org/

Glut1 Deficiency FoundationGluten Intolerance Group http://www.gluten.net

http://www.gdatf.org/

Graves’ Disease Foundation http://www.ngdf.org

Greipp, Philip R, M.D.

http://www.gepac.es/

Gwendolyn Strong Foundation http://theGSF.orgHaemochromatosis Australia.

Hailey-Hailey Disease Society http://haileyhailey.comHailey's Wish http://www.haileyswish.org/

Hands & VoicesHannahs Hope Fund

http://hesaonline.org/

HCS Support Group http://hajdu-cheney.com/Healthy Smiles, Healthy Children

http://www.hearingloss.orgHeart Rhythm Society http://www.hrsonline.org/

Glaucoma Research Society of Canada

http://www.glaucomaresearch.ca/http://globalcdh.org/Home.htmlGlobal Foundation for

Peroxisomal DisordersGlobal Genes - Allies in Rare DiseaseGlobal Hydranencephaly Foundation

http://www.hydranencephalyfoundation.org/Global Organization for Lysosomal

Diseaseshttp://www.G1DFoundation.org

Goldenhar Syndrome Support Network Society

http://www.goldenharsyndrome.org

Graves' Disease and Thyroid Foundation

Greenberg Center for Skeletal Dysplasias

https://igm.jhmi.edu/content/greenberg-center-skeletal-dysplasias-welcomehttp://www.mayoclinic.org/bio/10157425.html

Grupo Español de Pacientes con CáncerGuthy-Jackson Charitable Foundation

http://www.guthyjacksonfoundation.org/http://www.haemochromatosis.org.au

Hajdu-Chaney (HCS) Support Group

http://www.hajdu-cheney.com/http://www.handsandvoices.orghttp://www.hannahshopefund.org/

Hashimoto’s Encephalopathy SREAT Alliance

http://www.aapd.org/foundation/

Hearing Loss Association of America

Helping Hands Foundation

Hemophilia Federation of America http://hemophiliafed.org/Hepatitis Foundation International

Hereditary Disease Foundation http://www.hdfoundation.orghttp://www.hlrccinfo.org/

http://www.hnf-cure.org/

Heterotaxy Foundation http://www.heterotaxy.org/HHV-6 Foundation

http://www.hideandseek.org

http://www.hs-foundation.org/

http://www.hirschsprungs.info

http://www.histio.org/http://www.histiocytosis.ca

Hope 4 Tyler and Luke!

http://hopeforhh.org/Hope For Trisomy

http://www.hopefortwo.org

HOPES http://hopes.stanford.eduHuman Growth Foundation http://www.hgfound.org/Hunter Patients

Hunter's Hope Foundation http://www.huntershope.orgHuntington Society of Canada

http://www.hdsa.org/

Hydrocephalus Association http://www.hydroassoc.org

Helping After Neonatal Death (HAND)

http://www.handonline.org/resources/handgroups.htmlhttp://www.helpinghandsgroup.org/

Hemimegalencephaly Family Support Network

http://www.hemimegalencephaly.com/http://www.hepatitisfoundation.org

Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family AllianceHereditary Neuropathy Foundation Inc.Hermansky-Pudlak Syndrome Network, Inc.

http://www.hpsnetwork.org/en

http://www.hhv-6foundation.org

Hide and Seek Foundation for Lysosomal Storage Disease ResearchHidradenitis Suppurativa Foundation, Inc.Hirschsprung's & Motility Disorders Support NetworkHistiocytoid Cardiomyopathy Registry

http://www.pathology.emory.edu/AdminFacultyMember.cfm?Name_seq=709Histiocytosis Association of

AmericaHistiocytosis Association of CanadaHITS (Worldwide) Family Support Network

http://www.e-fervour.com/hits/http://www.hope4tylerandluke.com

Hope for Hypothalamic Hamartomas http://

www.hopefortrisomy.orgHope for Two...The Pregnant with Cancer Network

http://www.hunterpatients.com/

http://www.huntingtonsociety.org/

Huntington's Disease Society of America

http://www.ghrforg.org/http://www.4hcm.org

http://www.hpth.org/Hypoparathyroidism UK http://www.hpth.org.ukHypophysitis Research Center

http://www.HEAinfo.orgI - CAN http://child-amputee.net/Ichthyosis Support Group http://www.ichthyosis.org.uk/ICP Care http://www.icpcare.orgICP Support http://www.icpsupport.org/IDIC15 Canada http://www.idic15canada.ca/

IgA Nephropathy Support Network http://www.igansupport.org/http://www.idfa.org.au/

Immune Deficiency Foundation

In Need of Diagnosis, Inc.

http://www.ipif.org/

India Cancer Care Network (ICCN) http://www.iccn.in/

http://www.idsociety.org/

http://www.eraseibc.com/

http://www.go-ipad.org

http://www.theibta.org/

http://www.anophthalmia.org

Hydrocephalus Research FoundationHypertrophic Cardiomyopathy AssociationHypoparathyroidism Association, Inc.

http://pathology2.jhu.edu/hypophysitis/Definition.cfm

Hypospadias Epispadias Association

Immune Deficiencies Foundation Australia

http://www.primaryimmune.org/http://www.inod.org/home0.aspx

Incontinentia Pigmenti International Foundation

Infectious Diseases Society of AmericaInflammatory Breast Cancer FoundationInstituto Canguru - Support Group for Inborn Errors of Metabolism and Disorders

http://www.institutocanguru.org.br

Instituto Nacional del Cáncer (NCI)

http://www.cancer.gov/espanolIntermountain PKU and Allied

Disorders AssociationInternational Aicardi-Goutieres Syndrome Association (IAGSA)

http://www.aicardi-goutieres.org/index.jsp?lingua=ENG

International Alliance of Patients' Organizations

http://www.patientsorganizations.org/International Birth Defects

Information Systemshttp://www.ibis-birthdefects.org/start/found.htmInternational Brain Tumour

AllianceInternational Castleman's Disease Organization

http://www.castlemans.org/about

International Children's Anophthalmia Network (ICAN)International Cluttering Association

http://associations.missouristate.edu/ica/

http://costellokids.com/

http://www.costellokids.com

http://www.idf.org/

International Dyslexia Association http://www.interdys.orgInternational Eosinophil Society

http://www.ilep.org.uk

http://www.ifopa.org/

http://www.cdkl5.com

http://www.iffgd.org/

http://www.ifond.org

http://www.marfanworld.org

International FoxG1 Foundation http://www.foxg1.com/http://www.iga.org.uk

http://www.hipdysplasia.org/

http://www.SweatHelp.orghttp://ilads.org/

http://www.imdsa.org

International Myeloma Foundation http://myeloma.org/http://www.myotonic.org/

International OCD Foundation http://www.ocfoundation.org

http://www.iofbonehealth.org/

International Collaborative Study of Susac's Syndrome

http://www.ucalgary.ca/susac/clinicalstudyall

International Costello Syndrome Support GroupInternational Costello Syndrome Support Group International Cystinuria Foundation

http://www.cystinuria.org/resources/education/

International Diabetes Federation (IDF)

http://www.eosinophil-society.org/

International Essential Tremor Foundation

http://www.essentialtremor.org

International Federation of Anti-Leprosy Associations (ILEP)International Fibrodysplasia Ossificans Progressiva Association International Foundation for CDKL5 ResearchInternational Foundation for Functional Gastrointestinal DisordersInternational Foundation for Optic Nerve Disease (IFOND) International Foundation of Marfan Syndrome Organizations

International Glaucoma AssociationInternational Hip Dysplasia InstituteInternational Huntington Association

http://www.huntington-disease.org

International Hyperhidrosis SocietyInternational Lyme and Associated Diseases SocietyInternational Mosaic Down Syndrome Association

International Myotonic Dystrophy Family FoundationInternational Myotonic Dystrophy Organization

http://www.myotonicdystrophy.org

International Organization of Glutaric Aciduria

http://www.glutaricacidemia.org/

International Osteoporosis Foundation

http://www.ipopi.org/

http://www.pemphigus.org

http://www.ipwso.org

http://www.ipofa.org/

http://www.irsa.org

http://www.rettsyndrome.org/

http://www.sclero.org/

http://www.isid.org

http://www.ispad.org/

http://www.stillsdisease.org

http://www.wagr.org

http://www.iwmf.com/

http://www.isna.org/

Interstitial Cystitis Association http://www.ichelp.org

http://www.ihrfoundation.org

http://www.ice-epilepsy.org/

http://www.iffcmh.org

Iron Disorders Institute Inc. http://www.irondisorders.org/http://www.ironoverload.org

http://www.registromyh9.org/

ITP Foundation http://www.itpfoundation.org

It's My Heart, Inc. http://www.itsmyheart.org

International Palindromic Rheumatism Society

http://www.palindromicrheumatism.org/International Patient Organization

for Patients with Primary Immunodeficiencies International Pediatric Hypertension Association

http://www.pediatrichypertension.orgInternational Pemphigus &

Pemphigoid FoundationInternational Prader-Willi Syndrome OrganisationInternational Premature Ovarian Failure AssociationInternational RadioSurgery AssociationInternational Rett Syndrome Association

International Scleroderma Network (ISN)International Society for Infectious DiseasesInternational Society for Pediatric and Adolescent DiabetesInternational Still's Disease FoundationInternational WAGR Syndrome Association International Waldenstrom’s Macroglobulinemia FoundationIntersex Society of North America (ISNA)

Intracranial Hypertension Research FoundationIntractable Childhood Epilepsy AllianceIowa Federation of Families for Children's Mental Health

Iron Overload Diseases Association, Inc.Italian Registry of MYH9-Related Disease

Jacob's Cure http://www.jacobscure.orgJain Foundation

http://www.jsof.org

JDRF Monogenic Diabetes Section

http://www.info4pi.org/

http://www.jeunesfamily.org/

JMML Foundation, Thehttp://www.jdfaf.org

http://jonahsjustbegun.org/

Joshua Frase Foundation http://www.joshuafrase.org

http://www.jsrdf.org

http://www.jdrf.org/

Juvenile Scleroderma Network http://www.jsdn.orgKabuki Syndrome Network http://kabukisyndrome.com/

Kawasaki Disease Foundation http://www.kdfoundation.org/Kawasaki Support Group http://www.kssg.org.ukKennedy's Disease Association

KFS Circle of Friends:

KickAS.org http://www.kickas.orgKidney Cancer Association http://KidneyCancer.orgKids v Cancer http://www.kidsvcancer.org/

http://www.kidswithheart.org

Kleefstrasyndrome.org

http://www.klsfoundation.orgKlippel-Feil Syndrome Alliance http://kfsalliance.org/

https://www.jain-foundation.org/

Janine's sarcoidosis outreach foundation

http://www.monogenicdiabetes.org/index.htmlJeffrey Modell

Foundation/National Primary Immunodeficiency Resource CenterJeunes Syndrome Family FoundationJewish Genetic Disease Consortium (JGDC)

http://www.JewishGeneticDiseases.orghttp://www.jmmlfoundation.orgJohn Douglas French Alzheimer's

FoundationJonah's Just Begun-Foundation to Cure Sanfilippo Inc.

Joubert Syndrome & Related Disorders Foundation

http://www.joubertfoundation.com/

Joubert Syndrome and Related Disorders FoundationJustin E. Rodgers Foundation for Lemierre's Awareness, Inc.

http://www.lemierresyndrome.com/

Juvenile Diabetes Research Foundation International

Kartagener's Syndrome and Primary Ciliary Dyskinesia Foundation

http://www.kartagener-syndrom.org/cms/index.php?lang=en

http://www.kennedysdisease.orghttps://sites.google.com/site/kfscircle/

Kids With Food Allergies Foundation

http://www.kidswithfoodallergies.orgKids with Heart National

Association for Children's Heart Disorders http://

www.kleefstrasyndrome.org/Kleine Levin Syndrome Foundation

Klippel-Trenaunay Support Group http://k-t.org/Kniest SED Group

http://www.ksibcf.org

Kure It http://www.kureit.org

http://www.femexer.org/

La Leche League International http://www.llli.org

LAM Action http://lamaction.org/LAM Treatment Alliance http://www.curelam.orgLaryngeal Cleft

Laryngeal Cleft Kids

http://www.lmbbs.org.uk/

http://www.lmbbs.org.uk

http://www.ldnz.org.nz/

http://www.ldaamerica.org

http://www.lhon.org

Les Turner ALS Foundation http://www.lesturnerals.org/

http://www.lesch-nyhan.org

Let's Face It

Leukemia Foundation http://www.leukaemia.org.au/Lewy Body Dementia Association http://www.lbda.org/

http://www.ksginfo.org/kniest.html

Kommah Seray Inflammatory Breast Cancer Foundation

La Asociación de Afectados de Neurofibromatosis

http://www.neurofibromatosis.es

La Federación Española de Enfermedades Raras (FEDER)

http://www.enfermedades-raras.org

La Federación Mejicana de Enfermedades Raras (FEMEXER)

La Sociedad Americana Contra el Cancer

http://www.cancer.org/espanol/

http://www.laryngeal-cleft.comLaryngeal Cleft European Support

Grouphttp://laryngeal-cleft-support-group.ning.com/http://laryngealcleftkids.ning.com/

Late Onset Tay-Sachs Research and Education Foundation

http://www.lateonsettay-sachs.org/

Laurence-Moon Bardet-Biedl Society UKLaurence-Moon-Bardet-Biedl Society (LMBBS)LDNZ (Lysosomal Diseases New ZealandLearning Disabilities Association of AmericaLeber's Hereditary Optic Neuropathy Website

Lesch Nyhan.org and Lesch Nyhan International Study Group

http://www.lesch-nyhan.org/en/research/

Lesch-Nyhan Disease International Study Group

http://desica.dent.umich.edu/faceit/

LGS Foundation

Liam's Land Organization, Inc. http://www.liamsland.org/http://www.lfsassociation.org/

Lighthouse International http://www.lighthouse.orgLimb Differences http://limbdifferences.org/Lissencephaly Contact Group

Little People of America

Little People of America, Inc. http://www.lpaonline.org/Littlest Tumor Foundation http://www.littlesttumor.org

http://www.livestrong.org/

Living Beyond Breast Cancer http://www.lbbc.orgLiving with CIDP http://www.livingwithcidp.org/Living With Trisomy 13 http://www.livingwithtri13.orgLivingWithEagle.org

http://www.lmsdr.org

Locks of Love http://www.locksoflove.org/

http://www.loeysdietz.org/

Lowe Syndrome AssociationLPLD Connect http://www.lpldconnect.orgLung Cancer Alliance

Lupus Foundation of America http://www.lupus.org/

http://www.lgdalliance.org/

Lymphedema Family Study

Lymphedema People

http://www.lymphoedema.org

Lymphoma Research Foundation http://www.lymphoma.orgLynch Syndrome International

http://lgsfoundation.org/index.html

Li-Fraumeni Syndrome Association

http://www.lissencephaly.org.ukhttp://www.lpaonline.org/informacin-en-espaol

LIVESTRONG.- Lance Armstrong Foundation

http://www.livingwitheagle.org/LMSarcoma Direct Research

Foundation

Loeys-Dietz Syndrome Foundation - Canada

http://www.loeys-dietzsyndromecanada.org

Loeys-Dietz Syndrome Foundation (US)

http://www.lowesyndrome.org/http://www.lungcanceralliance.org

Lymphangiomatosis & Gorham's Disease AllianceLymphatic Education and Research Network

http://www.lymphaticnetwork.orghttp://www.hgen.pitt.edu/projects/lymphhttp://www.lymphedemapeople.com/wiki/doku.php?id=lipedemaLymphoedema Support Network

(LSN)

http://www.lynchcancers.com/

http://www.migraines.org/

M.I.S.S. Foundationhttp://www.macs.org.uk/

Macula.ORG http://www.macula.org/Macular Degeneration Foundation http://www.eyesight.orgMacular Degeneration Partnership http://www.AMD.orgMacular Degeneration Support http://www.mdsupport.orgMacular Disease Society

Madisons Foundation

Malia's Cord Foundationhttp://www.mhaus.org/

http://www.msud-support.org/

March of Dimes

March of Dimes

Marfan Association UK

Marigold Foundation

http://www.mdsc.org

M-CM Network http://www.m-cm.net/

mct8.org

https://www.medicalert.org

Medscape Reference - Cylindroma

Melorheostosis Association

Mended Hearts, Inc. http://www.mendedhearts.org

M.A.G.N.U.M. (The National Migraine Association)

http://www.missfoundation.orgMACS - The Micro and

Anophthalmic Children's Society

http://www.maculardisease.org/http://www.madisonsfoundation.org/http://www.cordfoundation.orgMalignant Hyperthermia

Association of the United States (MHAUS)Maple Syrup Urine Disease Family Support Group

http://www.marchofdimes.com/http://nacersano.marchofdimes.com

http://www.marfan-association.org.uk/http://marigoldfoundation.org/Marinesco-Sjogren Syndrome

Support Grouphttp://www.marinesco-sjogren.org

Massachusetts Down Syndrome Congress

http://www.mct8organization.org

MdDS Balance Disorder Foundation

http://www.mddsfoundation.orgMEBO Research: Systemic Body

Odor and Halitosishttp://www.meboresearch.org/aboutmebo.htmlMedicAlert Foundation

Internationalhttp://emedicine.medscape.com/article/1056630-overview#a0101Melanoma International

Foundationhttp://www.melanomainternational.orgMelnick-Needles Syndrome

Support Grouphttp://www.melnickneedlesyndrome.com/http://www.melorheostosisassociation.org

Meniere's Network

http://www.musa.org/

Mental Health America http://www.nmha.org/

http://www.curemeso.org

http://www.mheandme.com/

MHE Coalition http://www.mhecoalition.orgMHE Research Foundation

Michael J. Fox Foundation http://www.michaeljfox.org/http://www.michigan-pku.org/

http://www.macpad.org

http://www.mwva.org

Migraine Research Foundation

Missouri Family to Family

MitoAction http://www.mitoaction.org

Mitochondria Research Society http://www.mitoresearch.org

MLD Foundation http://mldfoundation.org/Moebius Syndrome Foundation

Moebius Warriors International http://www.moebius1.org

http://www.mend.org

Mowat Wilson Support http://www.mowatwilson.org

MPD FoundationMPDSUPPORT.ORG http://www.mpdsupport.org

http://www.earfoundation.org/programs.asp?content=menieres_networkMeningitis Foundation of America

(MFA)

Mesothelioma Applied Research FoundationMHE and Me- A Support Group for Kids with Multiple Hereditary Exostoses

http://www.mheresearchfoundation.org/

Michigan PKU & Associated Disorders, Inc.Mid-Atlantic Connection for PKU and Allied DisordersMidwest Women's Vascular Advocates

http://www.migraineresearchfoundation.orghttp://www.mofamilytofamily.org

http://www.moebiussyndrome.com

Mollaret's Meningitis Support Group

http://mollaretsmeningitus.ning.com/Mommies Enduring Neonatal

DeathMontgomery Heart Foundation for Cardiomyopathy

http://www.hopkinsmedicine.org/cardiomyopathy/Motor Neurone Disease

Association http://www.mndassociation.orgMovement Disorder Society

International Secretariathttp://www.movementdisorders.org/

Mowat-Wilson Syndrome Support Group

http://www.mwsupport.pwp.blueyonder.co.uk/http://www.mpdfoundation.org

MPN Research Foundation

MPN Education Foundation http://www.mpdinfo.org/http://www.marshallsmith.org

http://www.ml4.org/

http://www.themmrf.org/

http://www.msassociation.org

Multiple Sclerosis Foundation http://www.msfocus.org

Muscular Dystrophy Association http://www.mdausa.org/Muscular Dystrophy Campaign

http://www.mdff.org

My Child Without Limits

Myasthenia Gravis Association-UK http://www.mga-charity.org/#http://www.myasthenia.org

Myasthenic Kids UK http://myasthenickids.org/Myelin Project http://www.myelin.org

Myeloma CanadaMyeloma UK http://www.myeloma.org.uk/

Myocarditis Foundation

Myotonic Dystrophy Foundation http://www.myotonic.org

http://www.mtmrg.org

Myotubular Trust

Nail Patella Syndrome UK http://www.npsuk.org

Nail Patella Syndrome Worldwide http://www.npsw.org

Narcolepsy Network, Inc.

Nathan's Battle Foundation

http://www.mpnresearchfoundation.org/

MSS (Marshall-Smith Syndrome) Research FoundationMucolipidosis Type IV Foundation, Inc.Multiple Myeloma Research FoundationMultiple Sclerosis Association of America

http://www.muscular-dystrophy.org/

Muscular Dystrophy Family Foundation

http://www.mychildwithoutlimits.org/

Myasthenia Gravis Foundation of America, Inc.

http://www.myelomacanada.ca

Myeloproliferative Disease Support Group Daily Digest

http://www.myeloproliferative.orghttp://myocarditisfoundation.org/

Myotonic Dystrophy Support Group

http://www.myotonicdystrophysupportgroup.org/Myotubular Myopathy Resource

Grouphttp://www.myotubulartrust.com

http://www.narcolepsynetwork.orghttp://www.nathansbattle.com

http://www.nadf.us/

http://www.eyeresearch.org/

http://www.nbcam.org

http://www.nami.org/

http://www.naaf.org

http://www.nass.co.uk

National Aphasia Association http://www.aphasia.orghttp://www.anad.org

http://www.nafc.org/

http://www.nads.org

http://www.napvi.org

http://www.pxenape.org

National Association of the Deaf http://www.nad.orgNational Ataxia Foundation http://www.ataxia.orgNational Blood Clot Alliance http://stoptheclot.org/

http://www.nbmtlink.org

http://www.nbpepa.org

National Brain Tumor Society http://www.braintumor.orgNational Breast Cancer Coalition http://www.natlbcc.org

http://www.ncld.org

http://www.ncfsfa.org

http://nationaldb.org

http://www.ndsan.org

http://www.ndsccenter.org

National Down Syndrome Society http://www.ndss.orghttp://www.ndrf.org

National Adrenal Diseases FoundationNational Alliance for Eye and Vision Research (NAEVR)National Alliance of Breast Cancer OrganizationsNational Alliance on Mental Illness (NAMI)National Alopecia Areata Foundation (NAAF)National Ankylosing Spondylitis Society

National Association Anorexia Nervosa & Associated Disorders, Inc.National Association for Continence (NAFC)National Association for Down SyndromeNational Association for Parents of Children with Visual Impairments (NAPVI)

http://www.spedex.com/napvi/

National Association for Parents of the Visually ImpairedNational Association for Pseudoxanthoma Elasticum, Inc. (NAPE)

National Bone Marrow Transplant LinkNational Brachial Plexus/Erb's Palsy Association, Inc.

National Center for Learning DisabilitiesNational Chronic Fatigue Syndrome and Fibromyalgia Association National Consortium On Deaf-BlindnessNational Down Syndrome Adoption NetworkNational Down Syndrome Congress

National Dysautonomia Research Foundation

National Eczema Association

http://www.nemsn.org

http://www.fabrydisease.org/

National Federation of the Blind http://www.nfb.org/National Fibromyalgia Association http://www.fmaware.org

http://www.fmpartnership.org

http://www.nfra.net

http://www.celiaccentral.org/

http://nfed.org/

http://www.nffr.org

http://www.nfid.org

National Fragile X Foundation http://www.FragileX.org

National Headache Foundation http://www.headaches.orgNational Hemophilia Foundation http://www.hemophilia.org/

http://www.nhpco.org

http://nhfonline.orghttp://www.nidcr.nih.gov/

National Keratoconus Foundation http://www.nkcf.orgNational Kidney Center

National Kidney Foundation, Inc. http://www.kidney.org

http://www.nlmsf.org

National Lipedema Association http://www.lipedema.orgNational Lung Cancer Partnership

http://www.nationaleczema.orgNational Endowment for

Alzheimer's Researchhttp://www.memorymatters.org

National Eosinophilia-Myalgia Syndrome NetworkNational Fabry Disease FoundationNational Family Caregivers Association

http://www.thefamilycaregiver.org

National Fibromyalgia Partnership, Inc.

National Fibromyalgia Research AssociationNational Foundation for Celiac AwarenessNational Foundation for Ectodermal DysplasiasNational Foundation for Facial ReconstructionNational Foundation for Infectious Diseases

National Gaucher Foundation (NGF)

http://www.gaucherdisease.org/

National Gaucher Foundation of Canada

http://www.gauchercanada.ca/

National Hospice and Palliative Care Organization /Natl. Hospice FoundationNational Hydrocephalus FoundationNational Institute of Dental and Craniofacial Research

http://www.nationalkidneycenter.org

National LeioMyoSarcoma FoundationNational Lichen Sclerosus Support Group

http://www.lichensclerosus.org/

http://www.nationallungcancerpartnership.org

http://www.lymphnet.org

http://www.mardenwalker.org

National Marfan Foundation http://www.marfan.org

National MPS Society http://www.mpssociety.orgNational Multiple Sclerosis Society

http://www.nf.org

National Neutropenia Networkhttp://www.nnpdf.org

http://www.rarediseases.org

http://www.nodcc.org

http://www.novanews.org

http://www.nofas.org/

National Osteoporosis Foundation http://www.nof.org/

National Ovarian Cancer Coalition http://www.ovarian.org/National Pancreas Foundation

http://www.parkinson.org/

National PKU Alliance http://www.npkua.org/National PKU News http://www.pkunews.org/

http://www.info4pi.org

National Psoriasis Foundation http://www.psoriasis.org

http://www.naric.com/

http://www.help4adhd.orghttp://www.archrespite.org

National Rosacea Society

National Lymphedema Network (NLN)National Marden Walker Organization

http://www.nationalmssociety.org

National Neurofibromatosis Foundation

http://www.neutropenianet.orgNational Niemann-Pick Disease

Foundation, Inc.National Organization for Rare Disorders (NORD)National Organization of Disorders of the Corpus CallosumNational Organization of Parents of Blind Children

http://www.nfb.org/parents-and-teachers

National Organization of Vascular AnomaliesNational Organization on Fetal Alcohol Syndrome (NOFAS)National Osteonecrosis Foundation

http://www.nonf.org/index.html

http://pancreasfoundation.org/

National Parkinson Foundation, Inc.

National Primary Immunodeficiency Resource Center

National Rehabilitation Information CenterNational Resource Center on ADHDNational Respite Network and Resource CenterNational Reye's Syndrome Foundation

http://www.reyessyndrome.org/http://www.rosacea.org/index.php

National Scoliosis Foundation http://www.scoliosis.org/

National Shingles Foundation

National Sleep Foundationhttp://www.nspku.org/http://www.dysphonia.org

http://www.torticollis.org

http://www.spinalcord.org/

National Stroke Association http://www.stroke.org/http://www.ntsad.org

http://www.nucdf.org

http://www.nuff.orgNational Vitiligo Foundation Inc http://www.mynvfi.orgNational Vulvodynia Association http://www.nva.org

NBIA Disorders Association http://www.nbiadisorders.orgNephCure Foundation http://www.nephcure.org/

http://www.ndif.org

NET Patient Foundation

Neurofibromatosis Mid-Atlantic http://www.nfmidatlantic.org/Neurofibromatosis Midwest http://www.nfmidwest.orgNeurofibromatosis Network http://www.nfnetwork.org/Neurofibromatosis, Inc. California http://www.nfcalifornia.org

http://www.nfincne.orghttp://www.mdachina.org

http://www.ndf-hibm.org/

Neuropathy Association http://www.neuropathy.org/http://www.neutropenia.ca

http://www.vzvfoundation.org/http://www.sleepfoundation.orgNational Society for

PhenylketonuriaNational Spasmodic Dysphonia AssociationNational Spasmodic Torticollis AssociationNational Spinal Cord Injury AssociationNational Spinal Cord Tumor Association

http://www.spinalcordtumor.org

National Tay-Sachs and Allied Diseases AssociationNational Tay-Sachs and Allied Diseases Association, Inc

http://www.ntsad.org/index.php/the-diseases

National Urea Cycle Disorders FoundationNational Uterine Fibroids Foundation

Nephrogenic Diabetes Insipidus Foundation

http://www.ndif.org/public/pages/36-Welcome_to_NDI_Foundation

Nephrogenic Diabetes Insipidus Network

http://www.netpatientfoundation.org/

Neurofibromatosis, Inc., NortheastNeuromuscular Disease Association of ChinaNeuromuscular Disease Foundation

Neutropenia Support Association, Inc.

Nevus Network http://www.nevusnetwork.orgNevus Outreach, Inc. http://www.nevus.org/

Niemann-Pick Disease Group (UK)NIH Clinical Trials and You

No Stomach For Cancer

http://www.nkh-network.org

http://www.nlovca.org

Norrie Disease Association http://www.norriedisease.org/NORSEepilepsy.org http://norseepilepsy.org/

Northwest Parkinson's Foundation http://www.nwpf.orghttp://www.nimbl.eu/ni/Home

http://www.uveitis.org

Ocular Melanoma Foundation

Oklahoma Family Network

Organic Acidemia Association http://www.oaanews.org/

Organization for Autism Research

http://www.opdsyndrome.org/

Ovarian Cancer National Alliancehttp://www.ohf.org

Pachyonychia Congenita Project http://www.pachyonychia.org/Paget Foundation http://www.paget.org

http://www.niemannpick.org.ukhttp://www.nih.gov/health/clinicaltrials/index.htmhttp://www.nostomachforcancer.org/Nonketotic Hyperglycinemia

International Family NetworkNorma Livingston Ovarian Cancer Foundation

Nuclease Immune Mediated Brain & Lupus-like Conditions O.A.S.I.S. Online Asperger Syndrome Information and Support

http://www.aspergersyndrome.org

Ocular Immunology and Uveitis Foundation

http://www.ocularmelanoma.org/home.htm#http://www.oklahomafamilynetwork.orgOnline Mendelian Inheritance in

Man (OMIM)http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=603358Opsoclonus - Myoclonus U.S.A.

and International http://www.omsusa.org/index.htm

Organización Argentina “Gente Bajita”

http://www.gentebajita.org.ar/

Organización Mexicana de Enfermedades Raras (OMER)

http://omer.drupalgardens.com/es/nodehttp://www.researchautism.org/

Organization for Understanding Cluster Headaches (O.U.C.H.)

http://www.ouch-us.org/index.shtml

Orthostatic Tremor - information and forum

http://www.orthostatictremor.org/

Osteogenesis Imperfecta Foundation

http://www.oif.org/site/PageServer

Oto-PalatelDigital Syndrome Family Research Network

http://www.ovariancancer.org/Oxalosis and Hyperoxaluria

Foundation (OHF)

Pain Relief Foundation

PAN Support Network 2009

Pancreatic Cancer Action Network http://www.pancan.org/Panniculitis Support Group

PARENT TO PARENT OF NYS

http://www.prisms.org

http://www.PICKonline.org

http://www.pdf.orghttp://www.ppsg.org

http://www.prsresource.com

Pathfinders for Autism

Patients Connect http://patients-connect.com/PCDH19 Alliance http://www.pcdh19info.orgPedal with Pete (Cerebral Palsy)

http://www.reflux.org

http://www.pbtfus.org

http://pedsibd.org/

http://www.pndassoc.org/

Periodic Paralysis Association

Periodic Paralysis News Desk http://www.hkpp.orgPFIC A Resource for Parents http://www.PFIC.orgPGAD Support http://www.psas-support.com/PHCentral http://www.phcentral.org

http://www.22q13.org

http://www.painrelieffoundation.org.uk/http://www.pansupportnetwork.org/

http://www.groups.yahoo.com/group/panniculitis/Parent Project Muscular

Dystrophyhttp://www.parentprojectmd.org

Parent Technical Assistance Center Network

http://www.parentcenternetwork.org/parentcenterlisting.htmlhttp://www.parenttoparentnys.org/

Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS)Parents of Infants and Children with KernicterusParkinson's Disease Foundation, IncParkinson's Patients Support Groups, Inc.Parry-Romberg Syndrome Resource, Inc.

http://www.pathfindersforautism.org

http://pedal-with-pete.org/cerebral-palsy/

Pedal with Pete [For Research on Cerebral Palsy]

http://www.pedalwithpete.com

Pediatric Adolescent Gastroesophageal Reflux AssociationPediatric Brain Tumor Foundation of the United StatesPediatric Inflammatory Bowel Disease FoundationPediatric Neurotransmitter Disease AssociationPelizaeus-Merzbacher Disease Foundation

http://www.pmdfoundation.orghttp://www.periodicparalysis.org

Phelan-McDermid Syndrome Foundation

Pheo Para Troopers

Pierre Robin Network http://www.pierrerobin.org/Pioneering Unique Cures for Kids http://www.puckfund.orgPitt Hopkins Research Foundation http://pitthopkins.org/

Pituitary Network Association http://www.pituitary.org/http://www.prp-support.org

PKD Foundation http://www.pkdcure.orgPKS Kids http://www.pkskids.net

http://www.canpku.org/

http://www.pdsa.org/

PMG Awareness Organization, Inc. http://pmgawareness.org/

PML Consortium http://pmlconsortium.orgPMP Awareness Organization

PMP Pals http://www.pmppals.orgPMP Research Foundation, Inc. http://www.pmpcure.orgPoland Syndrome Suppport Group http://www.pssgcharity.org/Polio Experience Network http://www.polionet.org/Polycystic Kidney Disease Charity http://www.pkdcharity.org.uk

http://www.pcosupport.org

http://www.pfsfoundation.org/

Post-Polio Health International http://www.post-polio.org

Prader-Willi Syndrome Association http://www.pwsausa.org/http://www.pwsa-kansas.org

Preeclampsia Foundation http://www.preeclampsia.orgPrevent Blindness America

http://www.pcdfoundation.org

http://www.pcdsupport.org.uk

http://www.pheoparatroopers.org/

Pitt Hopkins Syndrome Support Group

http://groups.google.com/group/pitt-hopkins

Pityriasis Rubra Pilaris (PRP) Support Group (on-line)

PKU (Phenylketonuria) and Allied DisordersPlatelet Disorder Support Association

http://www.pmpawareness.org/

Polycystic Ovarian Syndrome AssociationPost Orgasmic Illness Syndrome (POIS) Forum

http://poiscenter.com/forums/index.php

Post-Finasteride Syndrome Foundation

Potentials Foundation - A Cause for Chloe

http://www.potentialsfoundation.org/Potocki-Lupski Syndrome

Outreachhttp://potockilupskisyndrome.org/

Potocki-Lupski Syndrome Outreach Foundation, Inc

http://www.PTLSfoundation.org

Prader-Willi Syndrome Association-Kansas

http://www.preventblindness.org/

Primary Ciliary Dyskinesia (PCD) FoundationPrimary Ciliary Dyskinesia Family Support Group

http://www.pia.org.uk/

http://www.pohdisease.org/

ProjectAccept.org http://www.projectaccept.orgPropionic Acidemia Foundation

http://www.paresearch.org

http://proteinsdeficiency.com/

Proteus Syndrome Foundation

Proteus Syndrome Foundation, UK

http://www.prunebelly.orgPSC Partners Seeking a Cure http://www.pscpartners.org/

http://www.pxe.org.uk/

PubMed Central website

Pull-thru Network

Pulmonary Fibrosis Foundation

Purine Research Society

PVNH Support & Awareness http://pvnhsupport.com/PXE International http://www.pxe.org

QT Syndrome.ch http://www.qtsyndrome.ch/Rachel's Well http://www.rachelswell.orgRamon Brugada Sr Foundation http://www.brugada.orgRare Anemias Foundation http://www.rareanemias.orgRare Cancer Alliance http://www.rare-cancer.orgRare Cancers Europe

http://rareadvocates.org/

RareChemo.org website http://www.rarechemo.orgRareConnect https://www.rareconnect.org/RareShare http://www.rareshare.org/RASopathies Network U.S.A. http://rasopathiesnet.org

http://www.raynauds.org.uk

Primary Immunodeficiency Association (UK)Progeria Research Foundation, Inc.

http://www.progeriaresearch.org

Progressive Osseous Heteroplasia Association

http://www.pafoundation.com/Propionic Acidemia Research

NetworkProtein S Deficiency and Thombophilia (online support)

http://www.proteus-syndrome.orghttp://www.proteus-syndrome.org.uk/

Prune Belly Syndrome Network, Inc.Pseudotumor Cerebri Support Network

http://www.angelfire.com/ok/PTCSupportNetwork/

Pseudoxanthoma Elasticum (PXE) Support Group (PiXiE)

http://www.pubmedcentral.nih.govhttp://www.pullthrunetwork.org/http://www.pulmonaryfibrosis.org/

Pulmonary Hypertension Association

http://www.phassociation.org/Page.aspx?pid=197http://www.purineresearchsociety.org/

http://www.rarecancerseurope.org

Rare Disease Legislative Advocates

Raynaud's & Scleroderma Association

Raynaud's Association http://www.raynauds.org/RDH12 Fund for Sight http://www.rdh12.org/RE Children's Project http://rechildrens.com/R-E Children's Project

RE Children's Project Inc http://rechildrens.org/

http://www.reach.org.uk

http://www.rrpf.org/

Red de Amor http://www.reddeamor.orghttp://www.rsds.org/

http://www.polychondritis.org

Related Brain Diseases http://www.psp.org/Renal Support Network http://www.rsnhope.org/ResearchMatch

http://www.resolve.org

Rest Ministries, Inc. http://www.restministries.orgRestricted Growth Association

Retina International

Retinitis Pigmentosa InternationalRett UK

http://www.rirdf.org

Ring Chromosome 20 Foundation http://www.ring20.orgRobinow Syndrome Foundation http://www.robinow.org/

http://www.rmdsa.org/

http://www.ropard.org

http://rtsplace.org/

RTS Canada

http://www.rechildrens.org/blog/

Reach Out for Youth With Ileitis and Colitis Inc.

http://www.reachoutforyouth.org/

Reach: The Association for Children with Hand or Arm DeficiencyRecurrent Respiratory Papillomatosis Foundation (RRPF)

Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA) Relapsing Polychondritis Awareness and Support Foundation, Inc

https://www.researchmatch.org/?route=gardResolve: The National Infertility

Association

http://www.restrictedgrowth.co.ukhttp://www.retina-international.orghttp://www.rpinternational.orghttp://www.rettuk.org/rettuk-public/rettuk.html

Rheumatic Heart Disease Network

http://www.world-heart-federation.org/rhd

Rhode Island Rare Disease Foundation

Rocky Mountain Down Syndrome AssociationROPARD:The Association for Retinopathy of Prematurity and Related DiseasesRothmund-Thomson Syndrome FoundationRoyal National Institute of Blind People

http://www.rnib.org.uk/Pages/Home.aspxhttp://www.rtscanada.org/what_is_canada.htm

SADS FoundationSarcoid Networking Association

Sarcoidosis Research Institute

Sarcoma Alliance

Sarcoma Foundation of America http://www.curesarcoma.orghttp://www.savebabies.org

SCAD Research http://www.scadresearch.org/

http://anausa.org/Scleroderma Foundation http://www.scleroderma.org/

http://www.srfcure.org

Scleroderma Society of Canada http://www.scleroderma.ca/Scoliosis Research Society http://www.srs.org

http://www.scotmnd.org.uk

Selective Mutism Foundation, Inc.

Self Help Queensland, Inc. http://www.selfhelpqld.org.auhttp://www.scid.net/

SHARE

http://www.nationalshare.org/

http://cockaynesyndrome.net

Sharsheret http://www.sharsheret.orgShwachman-Diamond America

Sibling Support Project

Rubinstein Taybi Syndrome Children's Foundation

http://www.facebook.com/RTSCF

Rubinstein-Taybi Syndrome Website

http://www.rubinstein-taybi.org/http://www.sads.org/StopSADShttp://www.sarcoidosisnetwork.orghttp://www.sarcoidosisresearch.orghttp://www.sarcomaalliance.org

Save Babies Through Screening Foundation, Inc

Schinzel-Giedion Syndrome Patient Support Group

http://www.schinzel-giedion.org/

Schiz Kidz Buddies Online Support Group for Schizencephaly

http://www.schizkidzbuddies.com/

Schwannoma Patient Support Group

Scleroderma Research Foundation

Scottish Motor Neurone Disease Association

http://www.selectivemutismfoundation.org

Severe Combined Immunodeficiencies Patient Support http://

www.sharecancersupport.orgSHARE - Pregnancy and Infant Loss Support, Inc.Share and Care Cockayne Syndrome Network Inc.

http://www.shwachmandiamondamerica.org/index.htmlShwachman-Diamond Syndrome -

Australia, Inc.http://www.shwachmandiamondsyndrome.com.auShwachman-Diamond Syndrome

Foundationhttp://www.shwachman-diamond.orghttp://www.siblingsupport.org/Sickle Cell Disease Association of

Americahttp://www.sicklecelldisease.org/

http://www.scdfc.org/

http://sctpn.org

http://www.sidelines.org

http://www.sickkids.ca/SÍNDROME X-FRÁGIL en Argentina http://www.xfragil.com.ar

Sjögren's Syndrome Foundation http://www.sjogrens.org/

Sjogren's World http://www.sjogrensworld.org

SMS Research Foundation

Sneddon's Foundation

http://eimaep.com/

http://www.mpssociety.co.uk

Society for Vascular Surgery

Soft Bones Inc. http://www.softbones.org

http://www.sssac.com

Spastic Paraplegia Foundation http://www.sp-foundation.orghttp://www.sbhao.on.ca

Spina Bifida Association

Spina Bifida Resource Network http://www.thesbrn.org

Spondylitis Association of America http://www.spondylitis.org/Starkey Hearing Foundation

Starlight Children's Foundation http://www.Starlight.orghttp://www.stars.org.uk/

Sickle Cell Disease Association of America, Inc-Eastern NC Chapter

http://www.sicklecelleasternnc.org

Sickle Cell Disease Foundation of CaliforniaSickle Cell/Thalassemia Patients NetworkSidelines High Risk Pregnancy SupportSimpson-Golabi-Behmel Syndrome

Smith-Lemli-Opitz/RSH Foundation

http://www.smithlemliopitz.org

Smith-Magenis Syndrome Foundation

http://www.smith-magenis.co.ukhttp://www.smsresearchfoundation.orghttp://www.sneddonsyndrome.org/

Sociedad Española de Errores Innatos del MetabolismoSociety for Mucopolysaccharide (MPS) Diseases

http://www.vascularweb.org/index.html

Sotos Syndrome Support Association

http://www.sotossyndrome.org/

Sotos Syndrome Support Association of Canada Spasmodic Torticollis ST/Dystonia, Inc.

http://www.spasmodictorticollis.org

Spina Bifida & Hydrocephalus Association of Ontario

http://www.spinabifidaassociation.org

Spinal Muscular Atrophy Foundation

http://www.smafoundation.org

http://www.starkeyhearingfoundation.org/

STARS- Syncope Trust and Reflex Anoxic Seizures

http://www.sjsupport.org/

Stickler Involved People http://www.sticklers.orgStone Circle of Friends

StopCAIDnow http://www.stopcaidnow.org/Stupid Cancer http://stupidcancer.orgSturge-Weber Foundation http://www.sturge-weber.orgSturge-Weber Foundation UK

http://www.sads.org

SuperHands http://www.superhands.us/

http://www.spohnc.org

http://www.sakks.org

Syndromes Without A Name USA

Taking Control of Your Diabetes http://www.tcoyd.orgTAR Syndrome Support Group http://www.ivh.se/TAR/Tarlov Cyst Disease Foundation

Team Sanfilippo Foundationhttp://www.tefvater.org

Testicular Cancer Society

Tetrasomy 18p Canada http://www.tetrasomy18p.ca/http://www.texasnf.org

http://www.aldfoundation.org

The Alkaptonuria Society

The ALS Association http://www.alsa.org

Statewide Parent Advocacy Network

http://www.spanadvocacy.org/Stevens Johnson Syndrome

Foundation

http://www.stonecircleoffriends.com/

http://www.sturgeweber.org.uk/

Sudden Arrhythmia Death Syndromes Foundation

Support For People With Oral And Head And Neck CancerSupport Group for DiGeorge and Velo-Cardio-Facial Syndromes

http://www.vcfsconnect.org/index.php?option=com_content&task=view&id=17&Itemid=33Support Organization for Trisomy

18, 13, and Related Disorders (SOFT)

http://www.trisomy.org/index.php

Supporting Aussie Kids with Kabuki SyndromeSupporting Families with Koolen-de Vries Syndrome

http://www.supportingkdvs.com/http://www.undiagnosed-usa.org

Taiwan Foundation for Rare Disorders

http://www.tfrd.org.tw/english/

http://www.tarlovcystfoundation.orghttp://www.teamsanfilippo.org/TEF VATER International Support

Networkhttp://www.testicularcancersociety.org/

Texas Neurofibromatosis FoundationThalassaemia International Federation

http://www.thalassaemia.org.cy

The Adrenoleukodystrophy Foundation

http://www.alkaptonuria.info/en/home.php

The Arc of East Central Iowa http://www.arceci.orgThe Arc of Illinois http://www.thearcofil.org/The Arc of the United States http://www.thearc.org

The Arthritis Society

http://www.best.org.il/

The Balanced Mind Foundation

The Bartter Site http://barttersite.org/

http://www.bcnf.bc.ca

The Brittle Bone Society http://www.brittlebone.org/

http://www.carcinoid.org/

The Children's Heart Foundation

The Children's Tumor Foundation http://www.ctf.org/The Cochrane Collaboration http://cfgd.cochrane.orgThe Cortical Foundation http://cortfoundation.org

The Dempster Family Foundation

http://www.ddnc.org/

The Ectodermal Dysplasia Society

The Endocrine Society http://www.endo-society.org

The Feingold Center for Children

The FH Foundation

http://www.fmdsa.org/

The FM Foundation

The American Porphyria Foundation

http://www.porphyriafoundation.com

The Arms of an Angel- Trisomy 18 Association

http://www.trisomy18dallas.orghttp://www.arthritis.ca/custom%20home/default.asp?s=1The Association for Fighting Best

DiseaseThe Bachmann-Strauss Dystonia & Parkinson Foundation

https://www.dystonia-parkinson.orghttp://www.thebalancedmind.org

The bonnie j addario lung cancer foundation

http://www.lungcancerfoundation.orgThe British Columbia

Neurofibromatosis Foundation

The Carcinoid Cancer Foundation, Inc.The Center for Peripheral Neuropathy

http://peripheralneuropathycenter.uchicago.edu/http://www.childrensheartfoundation.org/

The Degos Disease Support Network Web site

http://www.degosdisease.com/http://www.DempsterFoundation.orgThe Digestive Disease National

Coalitionhttp://www.ectodermaldysplasia.org/

http://www.thefeingoldcenter.org/http://www.thefhfoundation.org/

The Fibromuscular Dysplasia Society of America (FMDSA)

http://thefmfoundation.org/index.html

The Focus Foundation

http://www.atypicalhus.org

The Fragile X Society http://www.fragilex.org.uk

The G6PD Favism Association

The Glaucoma Foundation

The Haemophilia SocietyThe Hageman Foundation

The Heterotaxy Network

The Hormone Foundation http://www.hormone.org

The Hyperacusis Network http://www.hyperacusis.net/http://www.22q.org

http://www.ismrd.org/

http://www.iacfsme.org/

http://www.inciid.org

http://iois.in/

http://www.jtsma.org.uk

The J-Pouch Group http://www.jpouch.org/The Kidney Foundation of Canada http://www.kidney.on.ca

The LAM Foundation

The Lee Spark NF Foundation http://nfsuk.org.uk/http://www.leukemia.org/

http://sarcomahelp.org/

The Life Raft Group http://www.liferaftgroup.orgThe Lustgarten Foundation http://www.lustgarten.org

http://www.thefocusfoundation.org/FF/index.phpThe Foundation for Children with

Atypical HUS

http://www.g6pd.org/favism/english/http://www.glaucomafoundation.orghttp://www.haemophilia.org.uk/http://hagemanfoundation.org/The Hemispherectomy

Foundationhttp://hemifoundation.intuitwebsites.com/welcome.htmlhttp://www.theheterotaxynetwork.org

The Hughes Syndrome Foundation

http://www.hughes-syndrome.org/

The International 22q11.2 Deletion Syndrome Foundation, Inc.The International Advocates for Glycoprotein Storage Diseases (ISMRD)The International Association for CFS/METhe InterNational Council on Infertility Information Dissemination, Inc.The International Ocular Inflammation SocietyThe Jack McGovern Coats Disease Foundation

http://www.coatsdiseasefoundation.orgThe Jennifer Trust for Spinal

Muscular Atrophy

The Kimberly D. Holland Hodgkins Disease Foundation

http://www.hodgkinsfoundation.orghttp://www.thelamfoundation.org/about-lam.html

The Leukemia and Lymphoma SocietyThe Liddy Shriver Sarcoma Initiative

The MAGIC Foundation http://magicfoundation.orgThe Mastocytosis Society http://www.tmsforacure.org/

The Migraine Trust http://www.migrainetrust.org/

The Myositis Association http://www.myositis.org

http://www.thenccs.org

http://www.nnff.org/

http://www.albinism.org

http://www.nfauk.org

The Neuropathy Association http://www.neuropathy.orghttps://nf1registry.wustl.edu/

The Oral Cancer Foundationhttp://www.cdiffsupport.com/

The PBCers Organization http://www.pbcers.org/

The Pituitary Foundation http://www.pituitary.org.uk/The Pituitary Society

The PSP Association http://www.pspeur.orgThe Rarer Cancers Forum

The Romberg’s Connection

The Sickle Cell Information Center http://www.scinfo.orgThe Skin Cancer Foundation http://www.skincancer.org/

http://www.nsnet.org/smdi/

The Stennis Foundation

The Multiple System Atrophy Coalition

http://www.multiple-system-atrophy.org/

The National Breast Cancer Coalition/Fund

http://www.stopbreastcancer.org/

The National Children's Cancer SocietyThe National Coalition for Cancer Survivorship

http://www.canceradvocacy.org

The National Necrotizing Fasciitis FoundationThe National Organization of Albinism and Hypopigmentation (NOAH) The Neurofibromatosis Association

The NF1 Patient Research Initiative (NPRI)The Opsoclonus Myoclonus Syndrome Support Network, Inc.

http://www.omsupportnetwork.org/http://oralcancerfoundation.orgThe Original Clostridium Difficile

Support GroupThe Pancreatitis Supporters Network

http://www.pancreatitis.org.uk/

The Patty Brisben Foundation for Women's Sexual Health

http://www.pattybrisbenfoundation.com/

http://www.pituitarysociety.org

http://www.rarercancers.org.ukhttp://www.therombergsconnection.com/

The Society for Developmental and Behavioral Pediatrics

http://www.sdbp.org/index.cfm

The Society for Muscular Dystrophy Information International http://

www.stennisfoundation.org

The Stop ALD Foundation http://www.stopald.org

http://ww5.komen.org/

The VHL Family Alliance http://www.vhl.orghttp://www.thyca.org

Thyroid Cancer Forum-UK

TMJ Association, Ltd. http://tmj.orghttp://www.endthepain.org

TNA The Facial Pain Association http://www.fpa-support.org/

Tourette Syndrome Association http://tsa-usa.org

http://www.tourette.ca/

Transverse Myelitis Association http://www.myelitis.org

TREAT-NMD http://www.treat-nmd.eu/Tremor Action Network http://www.tremoraction.org

Trichotillomania Learning Center http://www.trich.org/Trisomy 18 Foundation

Tuberous Sclerosis Alliance http://www.tsalliance.org/

Turner Syndrome Foundation

Turner Syndrome Support Society http://www.tss.org.uk/

The Stuttering Foundation of America

http://www.stutteringhelp.org/

The Susan G. Komen Breast Cancer FoundationThe Twin to Twin Transfusion Syndrome Foundation

http://www.tttsfoundation.org/

ThyCa: Thyroid Cancer Survivors' Association, Inc.

http://www.thyroid-cancer-forum-uk.org

TNA -- Facial Pain Association (formerly the Trigeminal Neuralgia Association)

Together for the research on PCDH19 (Italy)

http://www.pcdh19research.org/ENG/index_ENG.html

Tourette Syndrome Foundation of CanadaTownes-Brocks Syndrome International Support Network

http://health.groups.yahoo.com/group/Townes-Brocks-Syndrome/

Treacher Collins Family Support Group

http://www.treachercollins.net/

http://www.trisomy18.org/site/PageServer

Trisomy 9 International Parent Support

http://www.trisomy9.org/9tips.htm

Turner Syndrome Aorta Dissection Registry

https://www.ohsu.edu/pedscardturner/TSform-test.htmhttp://www.turnersyndromefoundation.org/Turner Syndrome Society of the

United Stateshttp://www.turnersyndrome.org/

UCSF Fibrodysplasia Ossificans Progressiva Clinic

http://www.ucsfbenioffchildrens.org/conditions/fibrodysplasia_ossificans_prog

UKD Foundation http://www.ukdcure.org/

http://www.rarechromo.org

http://www.ubpn.orgUnited Cerebral Palsy (UCP) http://www.ucp.org

http://www.ucpa.org

http://www.ulf.org/

http://www.umdf.org

United Pompe Foundation

United Spinal Association http://www.unitedspinal.orghttp://www.usidnet.org

Urology Care Foundation http://www.urologyhealth.org/

http://www.haea.org

Vascular Birthmarks Foundation http://birthmark.org/Vascular Disease Foundation http://vasculardisease.org/Vasculitis Foundation

Vasculitis Foundation Canada http://www.vasculitis.ca/VCFS 22q11 Foundation http://www.vcfsfa.org.au

http://www.vcfsef.org

Vestibular Disorders Association http://www.vestibular.org

Virginia Breast Cancer Foundation http://www.vbcf.org

http://www.visionsvcb.org

Vital Options International http://www.vitaloptions.orghttp://vrfoundation.org

Vitiligo Support International

http://www.vor.net

Wagner Syndrome Website

Wake Up Narcolepsy, Inc.

http://wendtcenter.org/

Unique – Rare Chromosome Disorder Support GroupUnited Brachial Plexus Network, Inc.

United Cerebral Palsy Association, Inc.United Leukodystrophy Foundation (ULF)United Mitochondrial Disease Foundation

http://www.unitedpompe.com/index.cfm

United States Immunodeficiency Network (USIDNET)

US Hereditary Angioedema Association, Inc.

http://www.vasculitisfoundation.org/

Velo-Cardio-Facial Syndrome Educational Foundation

Vision of Children Foundation (VOC)

http://www.visionofchildren.orgVISIONS: Services for the Blind

and Visually Impaired

Vitiligo Research Foundation (VR Foundation)

http://www.vitiligosupport.org/front_page.cfmVOR-Speaking up for people with

intellectual & developmental disabilities

http://www.wagnersyndrome.eu/http://www.wakeupnarcolepsy.org/

Washington State Fathers Network

http://www.fathersnetwork.orgWendt Center for Loss and

Healing

Williams Syndrome Association

Willis-Ekbom Disease Foundation http://www.willis-ekbom.org

http://www.wicfs-me.org/Wiskott-Aldrich Foundation http://www.wiskott.org

http://www.ilep.org.uk/links/

World Craniofacial Foundation http://www.worldcf.org/World Federation of Hemophilia http://www.wfh.org/

http://lichensclerosus.org/

Wynne Foundation Inc.

http://www.xps.org

http://www.xlhnetwork.org/

XLP Research Trust

XP Family Support Group http://xpfamilysupport.com/XP Support Group

XXYY Project Organization

Yahoo! TarSupport

Young Survival CoalitionZellweger Baby Support Network http://zbsn.org/

http://www.williams-syndrome.org

Williams Syndrome Changing Lives Foundation

http://www.wschanginglives.org/

Williams Syndrome Family of Hope

http://www.wsfamilyofhope.org

Wilson Disease Association International

http://www.wilsonsdisease.org

Wisconsin ME/CFS Association, Inc.?Wolf-Hirschhorn Syndrome Trust (UK)

http://www.whs4pminus.co.uk/

Wolfram Syndrome UK Support Group

http://www.wolframsyndrome.co.uk/Working for A World Without

LeprosyWorld Arnold Chiari Malformation (ACM) Association

http://www.pressenter.com/~wacma/

Worldwide Lichen Sclerosus SupportWorldwide Society of Wolfram Syndrome Families

http://www.wolframsyndrome.org/http://www.wynnefoundation.org

Xeroderma Pigmentosum Family Support Group

http://www.xpfamilysupport.org

Xeroderma Pigmentosum Society, Inc (XP Society)XLH (X-linked Hypophosphatemia) Network, Inc.

http://www.xlpresearchtrust.org/

http://www.xpsupportgroup.org.uk

http://xxyysyndrome.org/english.php

Yahoo! Duane Syndrome Online Support Group

http://health.groups.yahoo.com/group/duanes/http://health.groups.yahoo.com/group/TarSupporthttp://www.youngsurvival.org/

Email Address: Add1: Add2:

11qusa@gmail.com 1641 Hunter Road

info@1p36dsa.org 906 NE Greenwood Ave.

131 Green Cook Road

director@fivepminus.org P.O. Box 268

info@avenuesforamc.com P.O. Box 5192

123 Edward Street Suite 1003 Toronto ON M5G 1E2

info@acceleratedcure.org 300 Fifth Avenue

531 Route 22 East #244

tianrama@aol.com P.O. Box 700248

150 West 75th St. Suite 4

accoi_info@yahoo.com P.O. Box 15482

P.O. Box 442

List of organizations from the Genetic and Rare Diseases (GARD) Information Center3/12/2015

david.koolen@radboudumc.nl

Radboud university medical center

Department of Human Genetics, 849

membership@4p-supportgroup.org

aptr@aplacetoremember.com

1885 University Avenue, Suite 110

http://www.atwistoffate-ats.com/contact.htmlhttps://sites.google.com/a/ohtahara.org/ohtahara2/contact-us

info@aboutfaceinternational.org

http://www.accordalliance.org/contact/email-us.html

http://www.ackc.org/contact-us/

http://www.accrf.org/html/contactus.php

glenn@naadvocacy.org 32 Launceston Place London W8 5RN

http://aisdsd.org/contact P.O. Box 2148

alagille@earthlink.net 10500 SW Starr Drive

info@aldlife.org PO Box 43642

aliber@aliber.org

P.O.Box 103

info@lupusresearch.org 28 West 44th Street Suite 501

PO Box 202 103 Rapidan Church Lane

Info@alpha1.org Alpha-1 Association

info@alpha1canada.ca 1638 Northway Avenue Windsor N9B 3L9info@alphaone.org

info@alportsyndrome.org 1608 E. Briarwood Terrace

jdm@jax.org 14 Whitney Farm Roadsharon@ahckids.org 2000 Town Center, Suite 1900

sdesj@verizon.net c/o Steve and Donna Hanson 5902 Marcie Court

hfillit@alzdiscovery.org 1414 Avenue of the Americas Suite 1502

http://allianceforcryo.org/contact-us/

alpha1advocacyalliance@yahoo.com

2937 SW 27th Avenue, Suite 106

2937 SW 27th Avenue Suite 302

info@alz.org 225 N. Michigan Ave., Fl. 17adear@nia.nih.gov P.O. Box 8250

info@alzfdn.org 322 Eighth Avenue 7th Floor

contactus@amc.org 3401 Quebec St, Suite 3200info@amdalliance.org 211 Wacker Drive Suite 1700

555 East Wells Street Suite 1100

930 E. Woodfield RoadP.O. Box 7424

aaomp@b-online.com 214 North Hale Street

pemr@aaos.org 6300 North River Road

info@aapsm.org

KSinfo@aaksis.org 3796 Odgen Lane.

aapos@aao.org P.O. Box 193832

aasld@aasld.org 1001 North Fairfax, Suite 400

info@aakp.org

444 North Capitol Street, NW Suite 846

aarda@aarda.org

18915 Inca Ave

info@behcets.com P.O. 869

info@abta.org250 Williams Street NW

ACPA@pacbell.net P.O. Box 850

AskADA@diabetes.org 1701 North Beauregard Street

knowledge@eatright.org

info@dystonia.us 17 Suffolk Lane, Suite 1info@aesnet.org 342 North Main Street

3505 E. Frontage Rd., Suite 315

22100 Gratiot Avenue Eastpointe

http://americanautonomicsociety.org/contact/

8550 W. Bryn Mawr Ave, Ste 550http://www.cancer.org/asp/

contactUs/cus_global.asp

120 South Riverside Plaza, Suite 2000

PO Box 32698

afbinfo@afb.net 2 Penn Plaza, Suite 1102communication@gastro.org 4930 Del Ray Avenue

23679 Calabasas Road # 682achehq@talley.com 19 Mantua Road

ahrf@american-hearing.org

7272 Greenville Avenue

mail@americanhs.org Unit #104 PMB 416

helpline@kidneyfund.org 6110 Executive Boulevard Suite 1010info@liverfoundation.org 39 Broadway, Suite 2700

1301 Pennsylvania Ave NW Suite 800

PO Box 515

1027 Hampshire Drive

aofasinfo@aofas.org 6300 N. River Road, Suite 510

info@aocd.org P.O. Box 7525

apda@apdaparkinson.org 135 Parkinson Avenue

mail@apfed.org PO Box 29545

9312 Old Georgetown Road

PO Box 875Suite DD1-201

info@skinassn.org

110 W. Ninth Street, Suite 826

inquire@americanhairloss.org

8 South Michigan Avenue, Suite #814

Review.personal.info@heart.org

4044 West Lake Mary Boulevard

http://www.lung.org/about-us/contact-us.html

http://www.amensupport.org/contact-us/

http://www.apma.org/Footer/ContactUs.aspxQuestions@AmericanPregnancy.org

1431 Greenway Drive, Suite 800

DD Building at the Cleveland Clinic,

346 Park Avenue South, 4th floor

http://www.sleepassociation.org/index.php?p=contactus

800 Florida Avenue Northeast #2047

asrm@asrm.org 1209 Montgomery Highway

2200 Research Boulevard

National Center 7272 Greenville Avenue

info@ASAP.org PO Box 1586

admin@thyroid.org 6066 Leesburg Pike, Suite 550

info@augs.org 2025 M Street NW, Suite 800aua@auanet.org 1000 Corporate Boulevard Suite 410

PO Box 016880vitiligo@avrf.org PO Box 7450

info@ameriface.org PO Box 751112

state@amputee-coalition.org 900 East Hill Avenue, Suite 205

ellen@amyloidosis.com.au 131-133 Napier Street St. Arnaud,

7151 N. Main Street Suite 2

232 Orchard Drive

alsinfo@alsa-national.org 27001 Agoura Road Suite 250

SI@als.ca 265 Yorkland Boulevard Suite 300

media@cureanca.com PO Box 435

info@angioma.org

info@aniridia.net 930 Madison Ave, Suite 3145 Wilby Close Bury

http://www.deafchildren.org/index.php/contact.html?view=foxcontact

Resources for patients page: http://www.asrm.org/Patients/mainpati.htmlhttp://www.asha.org/Forms/

National-Office-Contact-Form/

http://www.amyloidosis.org/contactus.aspinfo@amyloidosissupport.com,muriel@amyloidosissupport.com

http://www.angelman.org/contact-us/

4255 Westbrook Drive, Suite 219502 W. 21st Street, Suite G2-411

info@annabelleschallenge.org

info@APBDRF.org 8 West 37th Street

P.O. Box 26304

help@aamds.org 100 Park Avenue, Suite 108

info@aamac.ca 11181 Yonge Street Suite 321

P. O. Box 801

P.O. Box 261926

info@arpkdchf.org PO Box 70P.O. Box 7669

info@taguk.org.uk PO Box 1199bod@amcsupport.org P.O. Box 1883

presidencia@acelaweb.org Carrera 66 # 79 A – 82 Apt 3-102

asedh@asedh.org c/Plutón, 43 Ático 1ª

info@asociacionela.org.ar Avenida Belgrano 687 Piso 8, Oficina 33

adela@adelaweb.com

http://www.aosupport.org/contactus.htm

judistradinger@aphasiahope.org

http://www.apsfa.org/contact.htm

http://hibm.org/arm/about_arm:contact_us

http://www.arthritis.org/EMF/email.asp

C/ Hierbabuena, 12- local, bajo dcha

info@ictiosis.org Montserrat Querol Sanchís

Aguirre 1, 1º izquierda Bajo derecha C/Escorial, 20 Alcobendas 28100

info@ae3com.eu

galactosemia.es@gmail.com

asociaciónpgc@yahoo.com

info@debra.es

Solymar, km. 23500 Ciudad de la Costa

ela@ela-asso.com 53 cours Léopold

4 Fern Place

info@theaftd.org Radnor Station Building 2 Suite 320

maryc@agsdus.org PO Box 896

Old Hambledon Racecourse Sheardley Lane

210 East 64th Street 8th Floor

info@amend.org.uk The Warehouse No 1 Draper Street

Avda. Ballester, n.º 3 · 3.º-2.ª

http://asociacionnoonan.wordpress.com/contacto/

C/ Jacinto Benavente Nº 12 29601http://www.asdra.org.ar/

consultas/Uriarte 2011 (C1425FNA) C.A.B.A

xfragil@xfragil.net,xfragilmadrid@gmail.comatueru@enfermedadesrarasuruguay.org.uyasociacion@xfragilcolombia.org

European Leukodystrophy Association

https://www.agsd.org.uk/AboutAGSDUK/Home/Contactus/tabid/1011/Default.aspx

association@retinal-research.org

admin@bladderexstrophy.com

2901 W Kinnickinnic River Pkwy, Suite #311

info@genetic.org P.O. Box 872

digestive.motility@gmail.com 11 North Street

PO Box 62865

16 Rue Masaryk 69009 Lyon

info@atcp.org 5300 W. Hillsboro Blvd Suite 105

helpline@ataxia.org.uk Lincoln House Kennington Park

projects@allergy.org.au PO Box 450 Balgowlah NSW 2093

mail@alds.org.au 10 Mitchell Street Mentone Victoria 3194

contactus@autismspeaks.org 1 East 33rd St. 4th Floor920 Urban Avenue

karen@autoinflammatory.org P.O. Box 590354

bsfinfo@barthsyndrome.org P.O. Box 618

bdsra1@bdsra.org 166 Humphries Drive

AGMD International Corporate Headquarters

http://www.peyroniesassociation.org/contact-us/associationparatonnerre@yahoo.fr

http://www.autism-society.org/about-us/contact-us.html

4340 East-West Highway, Suite 350

https://aealliance.org/contact/

info@bccns.org PO Box 321bymrkh@gmail.com c/o Amy Lossie 3811 Woodridge Avenue

r.baker881@btinternet.com The Drum and Monkey Hazelbury Bryan

BWCFKathy@comcast.net

Head Office PO Box 27

bebrf@blepharospasm.org 637 North 7th Street, Suite 102 PO Box 12468

contact@bhdsyndrome.org

Laurie.Farmer@fda.gov

staff@birthdefects.org

info@bcan.orgLschauble@gocougs.wsu.edu SE 820 Meadow Vale Drive

P.O. Box 727

info@bloomssyndrome.org 7095 Hollywood Blvd. #583

210 Spring Haven Circle

info@brainaustralia.org.au P O Box 579 Crows Nest, NSW

6065 Roswell Road, Suite 505

212 West Van Buren Suite 1000

976 Lake Baldwin Lane, Suite 1044915 St. Elmo Avenue, Suite 202

http://www.bloomssyndromeassociation.org/general/?type=CONTACT

contact@brachialplexuspalsyfoundation.org

http://www.braintumorkids.org/web/contactus.asp

boh@breathofhopeinc.com PO Box 6627

info@brightfocus.org 22512 Gateway Center Drive670 N. Clark St., Suite 2

admin@bad.org.uk 19 Fitzroy Square London, UK W1T 6EHinfo@bdtype1.com PO Box 302info@bvvlinternational.org 4940 Knox Court

1225 King Street 2nd Floor

info@cadasilfoundation.org

2 Windrush Close Flitwick

PO Box 2115

info@diabetes.ca 1400-522 University AVE Toronto ON M5G 2R5811 - 14th Street NW Calgary

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sue@galactosaemia.org GSG, 31 Cotysmore Road

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http://angiopediatria.com.co/index.php/contactenosinfo@fundame.net,organizacion@fundame.netcromos@sindromedeturner.org.ar

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gravesdiseasefd@gmail.com 400 International Drivedeedee@jhmi.edu Johns Hopkins University

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hcsupport@cox.nethshc@aapd.org

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Down Syndrome Awareness Centers

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ilep@ilep.org.uk 234 Blythe Road London

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iha@huntington-assoc.com Callunahof 8 Harfsen, Intl 7217 ST

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contact@ihrfoundation.org 6517 Buena Vista Drive

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contact@pediatrichypertension.orghttp://www.pemphigus.org/living-with-pp/ask-a-coach/

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jsdinfo@jsdn.org 1204 W. 13th StreetDean & Margot Schmiedge 8060 Struthers Crescent

nc-fuerleru@netcologne.de

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kickas@kickas.org 11688 North Sage Brook Roadoffice@kidneycancer.org 1234 Sherman Avenue Suite 203

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ktnewmembers@gmail.com 5404 Dundee Rd.support@ksginfo.org

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faceit@umich.edu 1011 North University

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mda@mdausa.org 3300 East Sunrise Driveinfo@muscular-dystrophy.org 61 Southwark Street London SE1 0HL

mdff@mdff.org 2330 North Meridien Street

info@mga-charity.org The College Business Centre Uttoxeter New Road1821 University Ave W. Suite S256

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info@nfed.org 6 Executive Drive Suite 2

info@nfid.org 4733 Bethesda Avenue Suite 750

natlfx@fragilex.org 1615 Bonanza St. Suite 202ngf@gaucherdisease.org 2227 Idlewood Road, Suite 12

info@headaches.org 820 North Orleanshandi@hemophilia.orgnhpco_info@nhpco.org 1731 King Street, Suite 100

debbifields@nhfonline.org 12413 Centralia Roadnidcrinfo@mail.nih.gov Building 31, Room 2C39 31 Center Drive, MSC 2290

info@NKCF.org 6222 Wilshire Blvd., Suite 260

30 East 33rd Street

2843 E. Grand River #230

P.O. Box 5830 Lyme Regis

info@lipedema.org 27 Freeman Street

4301 Connecticut Ave. N.W. Suite 404

2121 S. Towne Centre Place, Suite 300

116 West 32nd Street, 11th Floor

http://www.kidney.org/about/contact.cfmhttp://www.nlmsf.org/contact-us.html

nln@lymphnet.org 225 Bush Street, Suite 357 Suite 235

staff@marfan.org 22 Manhasset Avenue

info@mpssociety.org 4220 NC Hwy 55, Ste.140nat@nmss.org 733 Third Avenue, 6th Floor

leereeves99@gmail.com P.O. Box 1693nnpdf@nnpdf.org P.O. Box 49

orphan@rarediseases.org 55 Kenosia Avenue PO Box 1968

info@nodcc.org PMB 363 18032-C Lemon Drive

admin@mail.novanews.org PO Box 38216

information@nofas.org 1200 Eton Court, NW Third Floor

Suite 201

1150 17th Street NW Suite 850

nocc@ovarian.orginfo@pancreasfoundation.org

contact@parkinson.org 200 SE 1st Street Suite 800

schuett@pkunews.org

info@jmfworld.org 747 Third Avenue

getinfo@psoriasis.org 6600 SW 92nd Ave., Suite 300

800 Eastowne Drive Suite 105

rosaceas@aol.com 196 James Street

401 Madison Avenue, Suite B

Good Samaritan Professional Building

http://www.nof.org/request-information

2501 Oak Lawn Avenue, Suite 4353 Bethesda Metro Center, Suite 700

By Virginia Schuett, MS, RD, Director and Editor

6869 Woodlawn Ave. NE #116

naricinfo@heitechservices.com

8201 Corporate Drive, Suite 600

nsf@scoliosis.org 5 Cabot Place

603 West 115 St. Suite 371

nsf@sleepfoundation.org 1522 K Street NW Suite 500

NSDA@dysphonia.org 300 Park Boulevard Suite 301

NSTAmail@aol.com 9920 Talbert Avenue

info@spinalcord.org 1 Church Street #600

Info@stroke.org 9707 E Easter Lane Building Binfo@ntsad.org 2001 Beacon Street Suite 204

info@ntsad.org 2001 Beacon Street, Suite 204

info@nucdf.org 75 South Grand Avenue

info@NUFF.org P.O. Box 9688

P.O. Box 4491

info@NBIAdisorders.org 2082 Monaco Ct.info@nephcure.org 15 Waterloo Ave

info@ndif.org P.O. Box 1390

Boxtrees Farm The Farm House

admin@nfnetwork.org 213 S. Wheaton Ave.

info@neuropathy.org 60 East 42nd Street Suite 942stevensl@neutropenia.ca 971 Corydon Avenue P.O. Box 243

shingles@shinglesfoundation.org

http://www.nva.org/contact.html

catherine@netpatientfoundation.org

http://www.ndf-hibm.org/index.php?option=com_contact&view=contact&id=1&Itemid=67

269 South Beverly Drive, Suite 1206

9202 Waterside Street, #203

wolfieworks@juno.com 1401 Ridgefield Avenue

joinnda@gmail.com P.O. Box 3244

nimbl@manchester.ac.uk

info@aspergersyndrome.org

fosters@uveitis.org 348 Glen Road

P.O. Box 29261

omsusa@siumed.edu P.O. Box 19643

kstagni@oaanews.org 13210 35th Avenue Northhogallegos@yahoo.com.ar

contact_ouch@ouch-us.org 3225 Winding Way

admin@orthostatictremor.org

bonelink@oif.org

ocna@ovariancancer.org 901 East Street NW, Suite 405execdirector@ohf.org 201 East 19th Street Suite 12E

info@pachyonychia.orgPagetfdn@aol.com 120 Wall Street, Suite 1602

http://www.nevus.org/contact-us_id45.php

600 SE Delaware Ave., Suite 200

info@nostomachforcancer.org

http://norseepilepsy.org/sample-page/

http://www.ocularmelanoma.org/contact-us.htm#

c/o National Pediatric Myoclonus Center

804 W. Diamond Ave, Suite 210

2386 East Heritage Way, Suite B

Clinical Sciences Centre

eob44@zoominternet.net

info@pancan.orgladypann@yahoo.com 100 Pleasant Acres Road

pat@parentprojectmd.org

info@prisms.org 21800 Town Center Plaza Suite 266A-633

karendixon@pickonline.org One Superior Place

info@pdf.org 1359 Broadway Suite 1509

prsresource@comcast.net 4815 Crystal River Ct.

petezeid@aol.com P.O. Box 274

pbtfus@pbtfus.org 302 Ridgefield Court

info@pedsibd.org 50 Congress St.

pnd@pndassociation.org 28 Prescott Place

lfeld@cfl.rr.com 155 West 68th Street Apartment 1732

calexeditor@nucleus.com 9751 Elbow Drive SW Calgary AB T2V 1M4

admin@pgad-support.com

dianna@pmsf.org P.O. Box 1016

secretary@painrelieffoundation.org.uk

University Hospital Aintree, Lower Lane

2141 Rosecrans Ave, Suite 7000

1012 North University Boulevard

jeffleonard@pmdfoundation.org

1307 White Horse Road, Suite 603

info@pheoparatroopers.org PO Box 2064

info@pierrerobin.org/ 3604 Biscayne

phrf@pitthopkins.org

info@pituitary.org P.O. Box 1958rgreene@temple.edu

pkdcure@pkdcure.org 8330 Ward Parkway, Suite 510

pdsa@pdsa.org 133 Rollins Avenue, #5

P.O. Box 47603

pmppals@yahoo.com PO Box 6484info@pmpcure.org 6415 Granger Rd. Suite 200

info@pcosupport.org PO Box 3403

contact@pfsfoundation.org 27 World’s Fair Drive

info@post-polio.org 4207 Lindell Blvd. #110

2305 Kitty Hawk Dr.

national@pwsausa.org

info@preeclampsia.org 5353 Wayzata Blvd,. Suite 207

info@pcdfoundation.org 10137 Portland Avenue South

pitt-hopkins@googlegroups.com

http://www.pkskids.net/contactus.htm

information@pmgawareness.org

julie@potockilupskisyndrome.org

8588 Potter Park Drive, Suite 500

211 West Wacker Drive, Suite 1700

info@pia.org.uk Alliance House 12 Caxton Street

info@progeriaresearch.org P.O. Box 3453

Info@pohdisease.org

paf@pafoundation.com 1963 McCraren Rd.

info@proteinsdeficiency.com

6235 Whetstone Drive

Tracey Whitewood-Neal, Chair 2 Watermill Close

P.O. Box 3914contactus@pscpartners.org 5237 So. Kenton Way Englewood CO, 80111ptcduncan@juno.com 8247 Riverside Drive

PTNmail@charter.net 2312 Savoy Street

info@pulmonaryfibrosis.org 230 East Ohio Street, Suite 340

PHA@PHAssociation.org 801 Roeder Road, Suite 1000

5424 Beech Avenue

info@pvnhsupport.cominfo@pxe.org

info@qtsyndrome.ch

foundation@brugada.org

1649 North Pacana Way

750 9th Street, NW, Suite 750

info@raynauds.org.uk 112 Crewe Road Alsager

5327 Westpointe Plaza Drive, #113

http://www.proteus-syndrome.org/html/contact.htmtracy.whitewood_neal@virgin.net

PurineResearchSociety@verizon.net

4301 Connecticut Avenue NW, Suite 404

Julia@RareAdvocates.org,arussell@everylifefoundation.org

swohlberg@rechildrens.com 79 Christie Hill RD

84 Northgate Circle

P.O. Box 54

bills@rrpf.org 12 Ashwood Court

info@rsds.org PO Box 502

admin@polychondritis.org 11740 Xeon Blvd. NW #105

info@resolve.org

P.O. Box 4744 Dorchester

Ausstellungsstrasse 36 CH-8005 Zurich

info@rpinternational.org PO Box 900support@rettuk.org Langham House West Mill Street

info@worldheart.org 32, rue de Malatrex

P.O. Box 934

ropard@yahoo.com P.O.Box 250425

helpline@rnib.org.uk RNIB Headquarters 105 Judd Street

rtscanada@mts.net 111 Twain Drive Winnipeg R3K 0R2

reachoutforyouth@reachoutforyouth.org

Helston Cornwall, Intl TR13 8WD

1760 Old Meadow Rd. Suite 500

christina.fasser@retina-international.org

33 Myers Farm Road

sarcoidosis@comcast.net 3475 Central Avenue

info@sarcomaalliance.org 775 E. Blithedale #334

info@curesarcoma.org 9884 Main Streetemail@savebabies.org P.O. Box 42197

10115 E. Bell Rd Suite 107-127

sfinfo@scleroderma.org 300 Rosewood Drive, Suite 105

info@srs.org

P.O. Box 282

931-B South Main Street #332

buchanan.joan@gmail.com 9 Jim Road Newham

127 Western Avenue

scdaa@sicklecelldisease.org 231 East Baltimore Street Suite 800

rtschildrensfoundation@gmail.com

http://www.scadresearch.org/about/contact-us/

http://www.srfcure.org/contact

220 Montgomery Street, Suite 1411

555 East Wells Street, Suite 1100

cockaynesyndrome@gmail.com

c/o Jackie Clark, President & Executive Director

shwachmandiamondamerica@embarqmail.com

info@shwachman-diamond.org

sidelines@sidelines.org P. O. Box 1808

tms@sjpgrens.org

gnoah@smithlemliopitz.org PO Box 10598

info@smith-magenis.co.uk 24 Brook Road Dersingham

Hospital de Cruces 48903 Baracaldo

mps@mpssociety.co.uk

633 N. St. Clair 24th Floor

info@sotossyndrome.org P.O. Box 4626

info@sssac.com 1944 Dumfries Montreal

info@spasmodictorticollis.org PO Box 28

PO Box 1208provinivial@sbhao.on.ca 555 Richmond St W PO Box 103

sbaa@sbaa.org 4590 MacArthur Boulevard, NW

info@smafoundation.org 888 Seventh Avenue Suite 400

info@spondylitis.org PO Box 5872

http://www.xfragil.com.ar/contacto1.php

6707 Democracy Boulevard, Suite 325

MPS House Repton Place White Lion Road

Amersham Buckinghamshire

vascular@vascularsociety.org

information@sp-foundation.org

SJSupport@aol.com P.O. Box 350333

sip@sticklers.org 15 Angelina

stopcaidnow@aol.com PO Box 992

SWF@sturge-weber.org P.O. Box 418

508 E South Temple, Suite 202

515 NW Saltzman Road #767

barbsoft@rochester.rr.com c/o Barb Vanherreweghe 2982 South Union Street

PO Box 946

326 Norton Road

4 Corinne Court Online email

info@thalassaemia.org.cy PO Box 28807 Nicosia 2083

info@adlfoundation.org 739 Michigan Avenue

manager@alkaptonuria.info 12 High Beeches

advocacy@alsa-national.org 1275 K Street, N.W. Suite 1050

http://www.superhands.us/7trg33/contactsh.html

http://www.koolenfamily.com/?page_id=5#contact-wrapper

http://www.tarlovcystfoundation.org/contact_us0.aspx

Childwall Liverpool L16 3GA

porphyrus@aol.com 4900 Woodway Suite 780

info@thearc.org 1010 Wayne Avenue, Suite 650

info@arthritis.ca Toronto, Ontario M5G 1E6

info@best.org.il Enbalim St' 27 Arad 80700

203-1001 Cloverdale Victoria, BC, Intl V8X 4C9

bbs@brittlebone.org 30 Guthrie Street Dundee

333 Mamaroneck Avenue Suite 492

Department of Neurology University of Chicago

PO Box 244

info@ctf.org/ 120 Wall Street, 16th floor

info@cortfoundation.org PO Box 201302

romano@hmcw.org 507 Capitol Court, NE Suite 200

Leckhampton

info@thenbdc.org 52 Second Avenue, 1st Floor Suite 520

info@thefhfoundation.org 1515 Hope Street, Suite 204

admin@fmdsa.org 20325 Center Ridge Road Suite 620

393 University Avenue, Suite 1700

info@childrensheartfoundation.org

http://www.degosdisease.com/contact

diana@ectodermaldysplasia.org

Unit 1 Maida Vale Business Centre

societyservices@endo-society.org

8401 Connecticut Avenue, Suite 900

http://thefmfoundation.org/contact-us.html

info@fragilex.org.uk Road End House 6 Stortford Road

1027 Hampshire DrivePO Box 1239

hormone@endo-society.org

hsf@btconnect.com Louise Coote Lupus Unit Gassiot House

i22qdsf@gmail.com 22 Tanforan Court

info@ismrd.org 3921 Country Club Drive

Admin@iacfsme.org 27 N. Wacker Drive Suite 416

INCIIDinfo@inciid.org P.O. Box 6836

executive.office@iois.org

20 Park Road Suite E

kidney@kidney.on.ca 700-15 Gervais Drive Toronto Ontario M3C 1Y8

info@thelamfoundation.org

info@nfsuk.org.uk Moor Hey Farm Knowle Greeninfocenter@lls.org

17 Bethea Drive

40 Galesi Drive, Ste. 19

8401 Connecticut Avenue, Suite 900

Vissum -Instituto oftalmologico de Alicante

Avda. de Denia, s/n (Edificio VISSUM)

coatsdiseasefoundation@gmail.com

4015 Executive Park Dr., Suite 320

1311 Mamaroneck Avenue , Suite 310

http://sarcomahelp.org/about.html?tpm=1_3

mary@magicfoundation.org 6645 West North AvenueP.O. Box 129

info@migrainetrust.org 52-53 Russell Square9935-D Rea Road Suite 212

TMA@myositis.org 1737 King Street, Suite 6001101 17th Street Northwest Suite 1300

info@canceradvocacy.org 1010 Wayne Avenue Suite 770

jroemmele@aol.com 31 Cloverhill Place

noah@albinism.org PO Box 959

nfa@zetnet.co.uk Quayside House

info@neuropathy.org 110 W. 40th Suite #1804

2116 Casa Linda Drive

3419 Via Lido #205cdiff@cdiffsupport.com

PSN@pancreatitis.org.uk Flat 15 Mayfield Court Off Mayfield Road

161 Commerce Blvd

1430 Garden Road

helpline@pituitary.org.uk P.O. Box 1944 Bristol BS99 2UBVA Medical Center 423 East 23rd Street

The Great Barn Godmersham Park

rombergs@hotmail.com

aplatt@emory.edu PO Box 109 Grady Memorial Hospital149 Madison Avenue Suite 901

info@sdbp.org 6728 Old McLean Village Drive

smdi@auracom.com P.O. Box 7490, Bridgewater Nova Scotia, B4V 2X6

http://www.tmsforacure.org/contact.php

38 High Street, Kingston-on-Thames

sandragreenberg@hotmail.cominfo@oralcancerfoundation.org

info@pattybrisbenfoundation.orgexecutivecommittee@pbcers.org

http://www.pituitarysociety.org/members/contacthttp://www.rarercancers.org.uk/contact

info@stutteringhelp.org P.O. Box 11749

helpline@komen.org 5005 LBJ Freeway Suite 250

info@tttsfoundation.org International Office 411 Longbeach Parkway

info@vhl.org 2001 Beacon Street Suite 208

info@fpa-support.org 408 W. University Ave. Suite 602

925 NW 56th Terrace Suite C

insiemepcdh19@yahoo.it c/o Francesca Squillante Via A. Polizano, 8

ts@tsa-usa.org 42-40 Bell Boulevard Suite 205

tsfc@tourette.ca #206, 194 Jarvis Street Toronto, Ontario

info@myelitis.org 1787 Sutter Parkway

info@tremoraction.org P.O. Box 5013

info@trich.org 207 McPherson Street, Suite HT18info@trisomy18.org 4491 Cheshire Station Plaza Suite 157

BTODD@roadrunner.com

info@tsalliance.org 801 Roeder RD, Suite 750silberbm@ohsu.edu Attn: Krista Gaeta 707 SW Gaines Road

Turner.Syndrome@tss.org.uk

533 Parnassus Ave. UC Hall U-504 Box 0734

http://www.fpa-support.org/contact.html

referral.center@ucsfmedctr.org

425 Madison Ave, 9th Floor

info@rarechromo.org P.O. Box 2189 Caterham

1610 Kent Streetinfo@ucp.org 1660 L Street, NW Suite 700

office@ulf.org 224 North Second Street Suite 2

info@umdf.org 8085 Saltsburg Road, Suite 201

david@unitedpompe.com c/o David W. Hamlin 5100 N. Sixth Street #119

info@usidnet.org

1000 Corporate Boulevard

info@haea.org Seven Waterfront Plaza

info@vdf.org 550 M Ritchie Highway PMB-281vf@vasculitisfoundation.org P.O. Box 28660

info@vcfsef.org PO Box 874

P.O. Box 13305

P.O. Box 4008

info@wagnersyndrome.eu PO Box 501 5000 AM

http://www.ukdcure.org/contact

PatientEducation@UrologyCareFoundation.org

500 Ala Moana Blvd., Suite 400

http://www.vestibular.org/about-veda/contact-veda.php

cdenofrio@visionofchildren.org

12671 High Bluff Drive, Suite 300

http://www.vitiligosupport.org/contact.cfm?process=form

info@williams-syndrome.org 570 Kirts Blvd Suite 223

info@wschanginglives.org PO Box 76021

info@wilsonsdisease.org 5572 North Diversey Blvd.

9 Church Way Tarring

31 Newtown Woods Road Newtown Square

info@worldcf.org P.O. Box 515838wfh@wfh.org 1425 Rene Levesque Blvd. W. Suite 1010

xps@xps.org 437 Syndertown Road

info@xlhnetwork.org 9426 Turnberry Drive

60 Winchester Road Romsey

8495 Folsom Blvd #12 Strawberry Close Prestwood

director@xxyysyndrome.org PO Box 2172

enquiries@whs4pminus.co.ukfamilies@wolframsyndrome.co.uk

http://www.xlpresearchtrust.org/keepintouch.aspwebmaster@xpsupportgroup.org.uk

Add3: Add4: Add5: Add6: Add7:

Postbox 9101

List of organizations from the Genetic and Rare Diseases (GARD) Information Center3/12/2015

6500 HB Nijmegen

10900 Carnegie Avenue

Victoria, 3478

BL8 1XU

Toronto Ontario M2J 1S5

C1092AAG

Canelones 15005

BP 267 - 54005

Southborough

08840 - Viladecans, Barcelona

290 King of Prussia Road

Droxford, Hampshire, SO32 3QY

Tunbridge Wells Kent TN4 0PG

1-3 Brixton Road London SW9 6DE

Dorset DT10 2EE

Watchet Somerset TA23 0YJ

1585 Suite 21 Regent House 37-43

Alexander Street Crows Nest, NSW 2065

Bedfordshire MK45 1PX

Alberta, T2N 2A4 4032708500

P.O. Box 42257

Hastings Ontario K0L 1Y0

Mississauga Ontario L5M 4Z0

Unit 10

Kings Lynn Norfolk PE34 4RT

Chesham Buckinghamshire HP5 2PX

Crewe CW2 6BG

Ontario

Wimborne BH21 9BU

116 Manning Dr.

West Sussex BN13 2HQ

Oamaru

L - 10 28043

Waipawa 4273 Hawkes Bay

MLD 3004

P.O. Box 9101

Gzira, Intl GAR 04

Barcelona

Oxford Road

3333 Burnet Avenue

Yeadon, LEEDS LS19 7XY

C/Villarroel, 170 · 08036University of Manchester

Michael Smith Building

Manchester M13 9PT

London WC2A 3XL

11 B 50009

T3A 1S9

450 Broadway

Mendoza, Argentina/ Serrano, 669

Ciudad Autónoma de Buenos Aires

Pavilion B, 4th Floor

Blalock 1008600 North Wolfe Street

Suite 466

Kelowna, B.C. V1W 4A7Devon

Children's Healthcare of Atlanta at Egleston

1405 Clifton Road

Assam

Levy 2

Via Mondino, 227100 Pavia

Room C4-348

Manchester, M40 3RQ

W14 0HJ

Henwood Ashford

Alberta Children's Hospital

2888 Shaganappi Trail NW

Calgary, Alberta T3B 6A8

Kent TN24 3DH

Cornwall PL11 3LE

Costozza 1-36023

2 Pavia 27100

Regina, Saskatchewan S4Y 1J3

Potters Green Coventry CV2 2FR

London SW3 6NH

Holyhead LL65 9AW

Fleet Hampshire GU51 3NG

East Sussex, TN40 2ST

Editor-in-Chief, Mitochondrion

Department of Cancer Genetics

Roswell Park Cancer Institute

BLSC Building, Room # 3-316

Elm and Carlton Streets

The Netherlands NL 2593 SZ

Derby

Glasgow G74 1YW

East Sussex Intl TN20 6ZL

Dorset DT7 3ZU

5601 Loch Raven Blvd.

Stratford Road B94 6EAHockley Heath

Winnepeg, Manitoba, R3M 3S7

Liverpool L9 7AL

London, SW1H 0QS

Bexhill-on-Sea East Sussex TN39 5EJ

Cheshire ST7 2JA

Dorset, Intl DT2 9FA

Luton LU1 2NA

London WC1H 9NE

Vic 3442

HP7 9LP

Quebec Intl H3P 2R9

Ste 1006

King's Lynn Norfolk PE31 6LG

Toronto, Ontario, M5V 3B1

DD1 5BS

5841 S. Maryland Ave MC 2030

Cheltenham Gloucestershire GL53 7ER

SE1 7EH

03016 Alicante

Ribchester Preston PR3 2XE

Great Dunmow, Essex, CM6 1DA

St Thomas' Hospital London

SURREY KT1 1HL

Moseley, Birmingham

Room 16048aW

West Midlands B13 9HS

Canterbury, Kent CT47DT

80 Jesse Hill Jr Drive SE

00184 ROME

M5B 2B7

Mail code: CDRC-P

Surrey CR3 5GN

Tilburg

Worthing West Sussex

Hampshire SO51 8JA

Montreal, Quebec H3G 1T7

Great Missenden Buckinghamshire HP16 0SG

Add8: City: State: Zipcode: Phone:

Waukesha WI 53189 678-267-3586

Bend OR 97701

Sunbury OH 43074

Lakewood CA 90714-0268 888-970-0777

Sonora CA 95370

St. Paul MN 55104

416-597-2229

Waltham MA 02451 781-487-0008

NJ 08889 908-349-0534

San Antonio TX 78270 210-494-6144

New York NY 10023 212-714-5341

San Diego CA 92175-5482

Needham MA 02494 (781) 248-9699

+31 24 361 3946

Whitehouse Station

020 7409 0092

Duncan OK 75354-2148

Tualatin OR 97062 503-885-0455

London SE22 0XR 020 8473 7493

Barrington NJ 08007

New York NY 10036 212-218-2840

Wolftown VA 22748 540-948-6777

Miami FL 33133

519-258-1444 Miami FL 33133 305-567-9888

Phoenix AZ 85048-9414 480-460-0621

Mount Desert ME 04660Southfield MI 48075 313-663-7772

Garland TX 75044-4958

New York NY 10019 212-935-2402

856-448-4085 or 925-315-RARE

Chicago IL 60601-7633 Silver Spring MD 20907-8250 301-495-3311

New York NY 10001

Denver CO 80207 303-233-6501Chicago IL 60606Milwaukee WI 53202-3823 (414) 272-6071

Schaumburg IL 60173 847-330-0230San Francisco CA 94120-7424 415-56-8500

Wheaton IL 60187 630-510-4552

Rosemont IL 60018-4262 847-823-7186

(301) 845-9887

Mundelein IL 60060-6038

San Francisco CA 94119-3832 (415) 561-8505

Alexandria VA 22314 703–299–9766

Tampa FL 33607-1796 813-636-8100

Washington DC 20001-1512 (202) 387-1968

East Detroit MI 48201-2227 586-776-3900

Lakeville MN 55044 952-469-5837

Smithtown NY 11787-0869 631-656-0537

Chicago IL 60631 847-827-9910 Atlanta GA 30329

Rocklin CA 95677-0850 916-632-0922

Alexandria VA 22311–1742

Chicago IL 60606-6995

Princeton Junction NJ 08550 310-237-5478West Hartford CT 06117-2507 860-586-7505

866-AFA-8484 (232-8484)

Tucson AZ 85751 520-733-1570

New York NY 10121 212-502-7600Bethesda MD 20814 301–654–2055

Calabasas CA 91301-1502Mt. Royal NJ 08061 856-423-0043

Chicago IL 60603-4539 (312) 726-9670

Dallas TX 75231-4596 214-373-6300

Lake Mary FL 32746–2012

Rockville MD 20852 301-881-3052New York NY 10006Washington DC 20004 202-785-3355

Northampton MA 01061-0515 413-268-7660

Maryville TN 37801 865-238-5842

Rosemont IL 60018 847-698-4654

Kirksville MO 63501 660-665-2184

Staten Island NY 10305 718-981-8001

Atlanta GA 30359 713-493-7749

Bethesda MD 20814-1621 301 581 9200

Irving TX 75038 972-550-1040

Harrison ME 04040-0875 207-583-4589 Cleveland OH 44106 216-229-8600

New York NY 10010 212-889-4858

Wilmington DE 19801

1–888–655–IRON (4766) or 407–829–4488

Washington DC 20002-3695 202-644-9204

Birmingham AL 35216-2809 205-978-5000

Rockville MD 20850-3289 301-296-5700

Dallas TX 75231 888-478-7653

Longview TX 75606-1586 800-272-7282

Falls Church VA 22041

Washington DC 20036 202-367-1167 Linthicum MD 21090 410–689–3990

Miami FL 33101-6880 305-326-6377Clearwater FL 33758

Las Vegas NV 89136 702-769-9264

Knoxville TN 37915 865-524-8772

03 9001 9312

Clarkston MI 48346

Wood Dale IL 60191 847-350-7540

Calabasas Hills CA 91301-5104

Jackson WI 53037 262-339-2733

Aurora IL 60504 630-978-4245

Norfolk VA 23517 757-623-0615

Memphis TN 38163 (901) 448-23800161 207 8337

1–800–THYROID (849–7643) or 703–998–8890

800-782-4747 (patient hotline)800-267-4ALS (800-267-4257)

New York NY 10018 212-643-1221

Shawnee Mission KS 66225-6304 913-839-8083

Rockville MD 20850 (301) 279-7202

Richmond Hill, ON 905-780-0698

LaCrosse WI 54602-0801 608-782-2626

Encino CA 91426-1926 (800) ARM-2000

Kirkwood PA 17536 717-529-5555Atlanta GA 30357-0669

Lincolnshire PE11 9EY 0800 028 4447Salyersville KY 41465

Bogotá 57 1 250 46 45

Barcelona

Buenos Aires

Madrid 91 311 35 30

934296529-695835411-4334-4844, 5411-4343-2706

28009 Madrid Madrid 656679317

(571) 2740520

Marbella (Málaga) 952 816 434011 4777 7333

Madrid

598(2696) 1914

3182392561

Plainview NY 11803 516-933-4700

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020 7188 8217

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34 902 33 33 44

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416-445-0373

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01227 738279

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984 196 152

965424866

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610-667-7036 866-224-3301202-966-8553

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(800) 345-HDSA (4372)

866-213-0394

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407-365-3213

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301-263-0776

800-452-2873

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(044) 1233 64 81 79

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513-636-0162

916-922-1458 866-628-1298

39 0444 555557

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617-278-9113

(850) 871-6656

941-927-4467

301–610–5308

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864-292-1878

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39 0382 526223

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310-479-0516 800-477-2243

904-607-1358

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978-356-2079 024 7661 2178

512-327-7002 800-850-9132;

408-269-2131

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913610042

847-969-0460 847-592-7570

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212-821-9707 800-829-0500 212-821-9713

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631-513-4476

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020 7349 9809

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806 356 4694

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0151 529 5821

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01308 898445

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800-722-HOPE (4673)800-441-CURE (2873)

888-825-SDSF (7373)

301-530-4415 800-475-6473

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303-648-6686

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22 314552

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781-487-2361

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(+44) 01382- 206771

(865)238-5844 (866)612-8579

301-941-0259

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416-445-7440 800-387-4474

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914-949-6691 800-955-4572

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973-837-9095

00 44 (0)1371 859915

800-HORMONE (1-800-467-6663)

708-383-0899 800-362-4423

020 7436 2886512-251-3315

800-821-7356202-265-6854 800-622-2838

301-565-9670 888-650-9127

800-473-2310;

212-692-0668

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902-685-3962

44(0)208 439 1200

(901) 761-0484 (800) 992-9392

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718-279-9596

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831-426-4383

301-562-9870 800-225-6872800-882-9996

888-689-8273

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+44 (0)141-952-8025

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412-793-6477 888-317-8633

(559) 227-1898

410-321-9165 800-296-4433

410–689–3998 1–800–828–7866

888-833-4463800-277-9474

866-VCFSEF5

503-229-8064 800-837-8428

858-794-2348

800-USA-5UCP (872-5827)

248-244-2230 800-806-1871

866-961-0533

972-566-3850 800-533-3315514-875-8916

877-XPS-CURE (877-977-2873)