Governing Board Elections 2017 - IAPO Board... · Founder & President, IPSPI . Contributed in research of Biosimilars by IAPO. Actively advocated for the cause of PID and Universal

Governing Board Elections 2017

Instructions and Nominee Profiles

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Contents

Instructions .............................................................................................................................. 3

Notes ....................................................................................................................................... 5

IAPO Governing Board ................................................................................................................ 6

Nominee Profiles ....................................................................................................................... 7

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Instructions

1. Read through these Instructions and the Notes on page 5 carefully.

2. Read through the Nominee Profiles on pages 8-34.

3. Select up to 3 (THREE) Nominees who you think should be on the Governing Board.

We recommend that you consider the following questions when deciding on your votes:

Has the applicant demonstrated patient leadership skills?

Does the applicant have the skills and experience needed to fulfil a governance role at

an international organisation??

Has the applicant demonstrated a commitment and contribution to IAPO (through

previous activities for and with IAPO)?

Please also consider which applicants’ experience would complement those already

represented on the board such as:

Representation of different disease areas or conditions

Representation of large and umbrella organizations and smaller, grassroots

organizations

Professional or volunteer experiences

Representation of developed and developing countries/regions of the world

Representation of all geographic regions

4. Place an X in the boxes next to your selected Nominees on the BALLOT PAPER.

5. Please ensure that you do not select more than 3 (THREE) boxes as this will invalidate your

BALLOT PAPER

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6. Send your BALLOT PAPER and the QUESTIONS & ANSWERS PAPER to IAPO so that it

reaches us by Friday 17 November 2017 at 16:00 (GMT).

BY EMAIL to: [email protected]

BY POST to:

Annual General Meeting 2017

IAPO

49-51 East Road

London N1 6AH

United Kingdom

We will send you a confirmation once your ballot has been received.

If you have any questions then please email: [email protected] or telephone: +44 20 7250

8280.

mailto:[email protected]

mailto:[email protected]

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Notes

All Nominees have committed:

- To attend two face-to-face meetings of the Governing Board per year (expenses reimbursed).

IAPO’s travel policy is that it will cover the cost of economy travel (by air, train or other

methods) for Board Members. IAPO aims to meet the needs of those with medical conditions

which require specific travel needs and support them on request.

- To be available for conference calls, telephone and email communications between these

meetings, both with other Governing Board Members and with IAPO staff as necessary.

- To be prepared to commit a minimum of two hours per week to IAPO.

- That they are able to use English as a working language (verbal and written).

- To ensure that their organization is in good standing and its membership fees are up to date.

The Biography and Further Information sections of the nomination form had clear maximum word

limits. Where these word limits have been exceeded the text has been cut at the end of a sentence or

natural break.

All ballot papers will be anonymous.

The THREE (3) Nominees with the most votes will gain a place on the Governing Board.

All Nominees will be informed of the Election outcome.

The three elected Board Members will be announced at the 2017 AGM on 20 November 2017.

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IAPO Governing Board

Please find below a list of the current Governing Board members, their terms and officer positions.

Name Term dates Position held

Andrew Spiegel 1st term (2016-2019) -

Androulla Eleftheriou 1st term (2016-2019) -

Hussain Jafri

1st term (2005-2009)

2nd term (2009-2012)

3rd term (2012-2015)

Stepped Down 1 year

4th term (2016-2019)

Chair Elect (2007-2009)

Chair (2009-2011)

Immediate Past Chair (2011-2013)

Treasurer (2017–2019)

Jolanta Bilińska

1st term (2009-2012) Secretary (2011-2013)

2nd term (2012-2015) Chair Elect (2013-2015)

3rd term (2015-2018) Chair (2015-2018)

Migdalia Denis 1st term (2016-2019) -

Penney Cowan 1st term (2015-2018) Secretary (2016-2018)

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Nominee Profiles

(in alphabetical order by surname)

Angela Chaves…………………………………………………………………………………………8

Rubby Chawla ………….……………………………………………………………………………10

Penney Cowan………………………………………………………………………………………13

Sita Ratna Devi………………………………………………………………………………………15

Christine Janus………………………………………………………………………………………18

Dalilah Kalla…..………………………………………………………………………………………21

Neda Milevska-Kostova…..………………………………………………………………………24

Biljana Mirceska……….……………………………………………………………………………27

Joshua Wamboga………………………….……………………………………………………….29

Tendayi Westerhof……………………………………………………………..………………….32

Durhane Wong-Rieger…………………………………………………..………………………..34

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Angela CHAVES

Position: President

Member organization: Colombian Federation of Rare Diseases

Membership type: Full member

Size: National

Country: Colombia

Website: http://www.fecoer.org/

Biography

What particular skills or expertise could you bring to IAPO’s Governing

Board?

Advocacy and policy, such as expertise on particular policy issues of

relevance to patients or of a particular policy-related organization (e.g. WHO,

PAHO, EU and UN etc)

Communications, such as strategy, media, identity, communicating key

messages

Financial, such as accountancy, strategy, financial planning or management

Fundraising, such as corporate and foundation fundraising

Legal skills

Membership strategy on a national, regional and international level

Organizational development and strategic planning

Public speaking

http://www.fecoer.org/

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Further details on skills (100 words)

What do you see as the opportunities for IAPO’s role promoting

patient-centred healthcare in the next 5 years?

Involvement with IAPO to date

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Rubby CHAWLA

Position: FOUNDER AND PRESIDENT

Member organization: INDIAN PATIENTS SOCIETY FOR PRIMARY

IMMUNODEFICIENCY-IPSPI


Size: National

Country: India

Website: http://www.ipspiindia.org/

Biography

I am Founder & President of IPSPI since 2004.IPSPI is: National Member

Organization of International Patients Organization for Primary

Immunodeficiencies – IPOPI, www.ipopi.org

Partners Organization for Rare Diseases India- ORDI, www.ordindia.org

Member of Indian Organization for Rare Diseases –I-ORD, www.i-ord.org

Full member of International Alliance of Patients Organization- IAPO,

www.iapo.org.uk

Member of Indian Alliance of Patients Group - IAPG

Conducted various National Events during World PI Week (22-29 April) every

year.

Regional CME conducted at KIMS,KIIT University, Bhubaneswar, Odisha, India

in 2012

International CME conducted at KIMS,KIIT University, Bhubaneswar, Odisha,

India in 2013

National CME conducted at Apollo Hospital, Bhubaneswar, Odisha ,India in

2014.

[Text cut as it exceeded the word limit]

http://www.ipspiindia.org/

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Board?





messages



Legal skills



Public speaking

Further details on skills

I am truly impressed by IAPO’s working from the day 1 when I was invited and

attended IAPO’s first South-east Asia Meeting in New Delhi in 2014.I was so

encouraged & motivated by the meeting & understanding of Universal Health

Coverage,Health for all, Patient Empowerment that I enrolled myself for PG

Diploma on Public Health & Services Management & completed it in flying

colours. Since then I have not looked back. As I have been working in the field

of Primary Immunodeficiencies for more than a decade, I am into Advocacy,

Patient empowerment & lobbying with Government for coverage of treatment

for PID patients.


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Patient-centred healthcare needs to be addressed strongly globally and very

strongly in developing country India. IAPO has prominent role to play in

promoting patient-centred healthcare and accomplishment of sustainable goals

of United Nation.


I have attended & participated actively in IAPO’s first South-east Asia meeting

in New Delhi in December 2013. Selected for representing South East Asia by

IAPO in SEARO WHO meeting from 7-11 Sep.,2015 at DILI, TIMOR-

LESTE.Invitation & participation at IAPO 7th Global Patients Congress 2016 at

Selsdon Park Hotel, London from 9-11 April,2016..Presentation on ‘Innovation

in rare or stigmatized diseases and disorders and treatment’ by Rubby Chawla,

Founder & President, IPSPI . Contributed in research of Biosimilars by IAPO.

Actively advocated for the cause of PID and Universal Health Coverage,Health

for All & treatment of PID Patients since IAPO’s contact & motivation.

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Penney COWAN

Member organization: American Chronic Pain Association


Size: National

Country: USA

Website: http://www.theacpa.org/

Biography


Board?





messages



Legal skills


http://www.theacpa.org/

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Public speaking


Month.


What do you see as the opportunities for IAPO’s role promoting patient-centred healthcare in the next 5 years?



15

Sita Ratna DEVI

Position: CEO

Member organization: Dakshayani and Amaravati Health and Education


Size: National

Country: India

Website: www.dakshamahealth.org

Biography

Public health professional, management degree, over 25 years of experience in

the government, private sector and not for profit. Have established India

Alliance of Patient groups with over 30 member organisations. Founding

member of National NCD Alliance and the National Rare Disease Alliance.

Member of the committee leading the civil society response to multistakeholder

action plan for NCDs in India. A full member of IAPO and have participated in

several campaigns, opinion surveys and technical sessions of IAPO. I work with

government and industry in policy and advocacy for inclusion of patient voice in

dialogue at all levels.


Board?





messages

Financial, such as accountancy, strategy, financial planning or

management


Legal skills


http://www.dakshamahealth.org/

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Public speaking


As Board member of National NCD Alliance and member APARDO, working at

National and Regional level on advocacy for specific thematic areas. I run

media campaigns, written over 20 articles, white papers and opinion editorials

in 2017. Managed twitter and facebook campaigns for AMR, Healthy heart and

WHD celebrations. We are a virtual organisation working with volunteers, we

multitask and am adept managing accounts, book keeping and management

skills which I can easily transfer. I run a National Alliance with a mission to

increase my membership to 100. I have been approached by Bangladesh and

Mauritius to start Alliances there, working on it.



IAPO is a key partner and influencer recognised globally as the representative

of patient voice. It has a collective strength of its member organisations to not

only influence policy and systems globally but also nationally, regionally and in

specific thematic areas. IAPO can also work in ideas exchange, best practice

dissemination and evidence based policy change. It can be a powerful

influencer for research in new therapies and large prevention strategies. An

important area is financing for healthcare that needs the collective strength of

IAPO. New and emerging diseases is another priority area.


Have participated and spoken in two congresses, Have marketed and raised

the profile of IAPO in India, helped increase membership by speaking to

member organisations about IAPO. Conducted and participated in PSD in India.

Participated in surveys, technical papers and resource (technical) building.

Started the Alliance in India in partnership and with support from IAPO. I use

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resources available with IAPO to work on patient empowerment. Have worked

with several board members on thematic areas- Rare Diseases etc.

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Christine JANUS

Position: CEO

Member organization: International Alliance of Dermatology Patient


Size: International

Country: Canada

Website: https://globalskin.org/

Biography


Board?





messages


management


Legal skills


https://globalskin.org/

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Public speaking


What do you see as the opportunities for IAPO’s role promoting patient-centred healthcare in the next 5 years?

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Involvement with IAPO to date 5 May2017- World Health Assembly(WHA), I attended 2 IAPO satellite sessions

to show my support as a member. I enjoyed an informal dinner with IAPO

staff–we are lucky to have such a dedicated team!

May 6-8, 2017- I was an invited speaker at the Person-Centered

Medicines(PCM) Conference, Geneva. I was honoured to represent IAPO and

joined a PCM discussion forum. I met with WHO representatives,

and was encouraged to bring IAPO colleagues to discuss PCM further.

So, at the WHA I arranged a joint meeting for IAPO(5.23) with a key WHO

representative and was also

delighted to have IAPO’s Past-President join me in another WHO

meeting(5.24)– both where IAPO’s potential for great influence was discussed.

IADPO/Globalskin became a member in 2015, and was modelled on IAPO,

thanks to the influence of a former IAPO Board member I met at a Harvard

Patient-Initiated Research course!

2015 IAPO Congress- I was a speaker- presentation on successful Canadian

advocacy tool.

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Dalilah KALLA

Position: Secretary and Spokesperson

Member organization: Lupus Alert


Size: National

Country: Mauritius

Website: http://www.lupusalert.com/

Biography

Lupus, the disease with a thousand faces, was unheard of in Mauritius until I

came out public with my traumatic experiences and agony of the disease.

Founder member of Lupus Alert, the only registered NGO in Mauritius that

provides support to lupus sufferers, I left no stones unturned, knocked on all

doors and succeeded in setting up a National Awareness campaign that had

mobilised public opinion and authorities about a life threatening disease.

Having successfully completed my secondary and tertiary education, I am

currently working in the Employ ability Service at the Middlesex University

Mauritius.


Board?





messages


management


Legal skills


http://www.lupusalert.com/

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Public speaking


Some of the skills I have developed while working with Lupus Alert are:

• the ability to relate to and communicate with a range of people;

• problem-solving skills and the ability to operate effectively under

pressure;

• the ability to build and maintain effective relationships in changing

teams;

• management of both people and projects and the ability to motivate

others;

• drive and determination to achieve results and initiate action;

• self-awareness and organisational awareness;

• negotiating and liaising with public bodies and other non-governmental

organisations

• researching and writing project proposals and reports



That patients are known as persons in context of their own social worlds,

listened to, informed, respected, and involved in their care—and their

wishes are honoured during their health care journey.

Helping patients to be more active in consultations changes centuries of

physician-dominated dialogues to those that engage patients as active

participants.


- April 2016: Lupus Alert is a member of IAPO

- October 2016: Lupus Alert represented IAPO at the WHO/GCM NCD

Global Dialogue held in Mauritius

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- April 2017: Lupus Alert participated in the IAPO Webinar: Tips and tools

for assessing credible health evidence.

- July 2017: African Regional Meeting held in Uganda.

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Neda MILEVSKA-KOSTOVA

Position: Executive Director

Member organization: Center for Regional Policy Research & Cooperation

'Studiorum'

Membership type: Associate member

Size: National

Country: Macedonia

Website: http://www.studiorum.org.mk/

Biography

My very diverse educational background, including pharmacy, molecular

biology and public health was essential to my understanding and fight for the

multifaceted and multicentered issues of modern day patient. My knowledge of

public policy and advocacy helped me in the fight for patients’ rights in diverse

national and regional contexts.

My work life started early, with writing on health issues for the student

newspaper. The desire to fight against injustice and unfulfilled health needs of

people brought me into the position of Executive Director of a think-tank

“Studiorum”, working on gathering evidence and using it to advocate for

patients’ rights across Europe and worldwide.


Board?


relevance to patients or of a particular policy-related organization (e.g.

WHO, PAHO, EU and UN etc)


messages Financial, such as accountancy, strategy, financial planning or management


http://www.studiorum.org.mk/

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Legal skills



Public speaking


My work in a think-tank for over 15 years was useful for me to learn and

practice negotiation, which is one of the assets I am willing to contribute with

to the further development and recognition of IAPO in the global and European

health arena. My advocacy skills have proven in action; in my country, I was

one of the initiators and devoted fighters for the Law for patients’ rights, which

is now endorsed and implemented in practice since 2008.

I have extensive experience in fundraising from diverse donors, including EU,

USAID, UNICEF, WHO, and so forth.

Over the past 15 years of my work in




− STRENGTH IS IN UNITY. Allying with other patients’ umbrella

organisations on specific issues of interest to patients, as well as with

professional umbrella organisations for targeted actions on specific topics of

interest to particular member organisations of IAPO.

− SUPPORT TO EVERY MEMBER IN NATIONAL EFFORTS. Relevance of

our work at global level is very much dependent on the successes of member

organisations at national and local levels. IAPO supporting its member-

organisations in their efforts on national level, with expertise, presence at

advocacy meetings in the countries, can very much contribute to its relevance

and recognition.

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At the same time, it will boost national efforts and give more international

dimension and recognition to the member organisations in achieving patient-

centred healthcare for their constituencies.

− JOINT SUCCESS COMES FROM EVERYONE. Building partnerships is

essential to getting stronger voice as civil society. IAPO should facilitate and

enable creation of partnerships among its member organisations, and support

these partnerships with expertise and resources.

− FUNDRAISING FOR JOINT ACTIONS. IAPO as alliance of over 270

organisations from 71 countries hold a very strong power and voice of many

patients worldwide. Its credibility and recognition can be instrumental in

fundraising for joint actions within the IAPO but as well with interested

individual member organisations. IAPO’s strength is in the membership, and

member organisations’ strength at international level is in IAPO membership


I joined IAPO and worked for its goals at national level through our

organisation Studiorum introducing it to other organisations and advocating

their membership; at regional level, I represented IAPO at the WHO Regional

committee for Europe, and other occasions and advocacy and scientific

conferences. Also, I contributed to several of IAPO’s policy briefs.

I attended IAPO’s events whenever possible, including 2 IAPO Global

congresses (in 2006 and 2012), and was very much inspired by the

enthusiasm and power of its members when coming together. I want to

contribute more to keeping the momentum.

Attended IAPO Global congresses in 2006 (Barcelona, Spain) and 2012

(London, UK) Represented IAPO at the 63rd WHO Regional Committee for

Europe, 2013, Izmir, Turkey

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Biljana MIRCESKA

Position: President and Founder

Member organization: NGO Slap - Save Liver Association of Patients


Size: Regional

Country: Macedonia

Website: N/A

Biography

General Manager 01/02/2016 - present at NGO SLAP

− implementation of the policy of the association

− Advocacy and coordinating the work of the association

− Communication and patient care

− Complete development and implementation of projects (education,

testing, hiring new members...)

− Communication and negotiation with the authorities

General Manager (01/09/2009 – 1/11/2015) at NGO HEPTA -Association for

health education, prevention and better treatment, Skopje

- Making projects / Full implementation of projects (organization, project

activities, research reports)/Maintenance of lectures / -Testing / Relationship

and care for patients / Public Relations (Media) /Negotiations with the

competent institutions / Cooperation with other organizations.


Board?





messages

28


management


Legal skills



Public speaking


I have worked 2 years as a journalist in a local TV as editor of a healthcare

programme. Also have published a book and I think that public speaking and

good text for news on media have a crucial importance for one message to be

wide spread and to get in touch with the audience. On the campaign organizing

for hepatitis in Macedonia, the message have arrived to the government and

the result of that campaign was putting the drugs for hepatitis on positive list.

That was a huge success. Also I have finished accounting course.



1, Policy makers and regulators should include patient-centred care as a

dimension of quality in its own right in strategic and other policy

documentation.

2, Collection and reporting of patient care experience data through quantitative

patient surveys and qualitative, narrative-based sources.

3, Focus on work environment, work culture and satisfaction of staff as an

integral strategy for improving patient-centred care.

These are only a few ideas.


Till today we are only have answered on some Surveys. We have no chance to

be more involved or we don,t know how can we do that. Anyway we hope to

have more cooperation in the future.

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Joshua WAMBOGA

Member organization: Uganda Alliance of Patients ‘Organizations (UAPO)


Size: National

Country: Uganda

Website: http://www.ugandapatientsorganizations.org/

Biography

I have been a board member and Chair Elect at IAPO until August 2017. I

served as board member at Uganda country coordinating mechanism for global

fund until June 2017. I serve as an expert review committee member at Access

to medicine Index foundation-Netherlands that assesses performance of

Pharmaceutical industries annually. I am also a Committee member of TWG for

WHO stop TB partnership-Working group on new drugs and Committee

member of Health technology assessment international (HTAI) - (PCISG).


Board?

Advocacy and policy, such as expertise on particular policy issues of relevance to patients or of a particular policy-related organization (e.g. WHO, PAHO, EU and UN etc)

Communications, such as strategy, media, identity, communicating key messages



Legal skills



Public speaking

http://www.ugandapatientsorganizations.org/

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Over a period of time, I have gained skills in board Governance & Management

of NGO’s; I come to IAPO with skills in over sight of Finance & Accounting,

Audit & Risk management plus membership recruitment, Policy Development

and Strategy & Planning skills for a growing NGO. I have Passion and

emotional commitment about the purpose of IAPO coupled with first hand &

experience & understanding of Africa Patients challenges such raising cases of

NCDs, Access to Medicine & health financing. I am dependable and engaged in

patients’ wellbeing. Over time, I have gained Strong program performance

skills with great focus on ensuring adequate resources to achieve organisation

goals.



1. IAPO to take a leading role in mobilising and setting up Africa region

patient’s network to strengthen response to UHC and health financing.

2. Global Resilient health system strengthening for UHC and Global Health

financing vs Patient cantered health services

3. African Medicines Agency that will ensure that all medicines available on

the African markets are safe, effective and of high quality (I am currently

involved in creating East Africa patients network)

4. Growing global need for Research & innovation to inform UHC

interventions in public & humanitarian work vs PC

5. Policy & Regulation for high impact access for UHC and patient cantered

health services

6. Effective communication for patient centred health services and UHC


1.Participated in organising and attending the IAPO African Regional meeting in

Entebbe in Uganda 4-5 July 2017. The meeting helped NEPAD and the AMA to

take note of the patient-voice include its perspective in regulatory

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harmonisation for establishment of AMA. IAPO Africa bio therapeutics advocacy

group was formed to champion patient’s voice in AMA

2.Represented IAPO at WHO AFRO sixth session meeting of the AFRO Regional

Committee (RC66) Meeting from August 19–23, 2016 at the United Nations

Conference Centre (UNCC) in Addis Ababa, Ethiopia. Adoption of several

patient centred resolution including palliative in financing frame work

3.Attended and participated in IAPO7th global congress 9-11 April 2016 in

London leading to production ultimate IAPO document to inform strategic

direction

4.Participated in board and committee meetings; fundraising and audit

committees-providing over sight leadership to IAPO program and policy

implementation including institutional strengthening

5.Represented IAPO at WHA on 23th May 2017, Geneva-presenting displaced

people with chronic disease


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Tendayi WESTERHOF

Member organization: Pan African Positive Women’s Coalition-Zimbabwe


Size: Local

Country: Zimbabwe

Website: http://www.papwc.org/

Biography

Tendayi Westerhof holds a diploma in Executive Business Leadership from the

Zimbabwe Institute of Management and another in Biblical Studies and

Christian Leadership from the Africa Multination for Christ College (AMFCC),

Affiliated to Friends. She has taken up several leadership roles which includes

the Zimbabwe Country Coordinating Mechanism for the Global Fund as an

alternate member where she represented networks of people living with HIV.

A former chairperson of Zimbabwe AIDS Network, Harare Province and served

on the ZAN National Governance Board. She has served on the International

Steering Group of the International Treatment Preparedness Coalition (ITPC)

were she represented Southern Africa.



Board?





messages


management


http://www.papwc.org/

33

Legal skills



Public speaking


I would promote the visibility of IAPO through public relations and media. I am

an experienced public speaker on patient-centred health care. I would also

help IAPO in fundraising and introduce a fund-raising strategy called champions

of patient-care. These will be individuals selected from the IAPO membership

who will be involved in public speaking and fund-raising for IAPO. I am

experienced with strategic planning development and to ensure that IAPO will

continue to align with the current developments such as the sustainable

development goals and universal targets. For the African region, as a board

member I will ensure a link, with the African Union.




IAPO has opportunity to capacity build its members in advocacy towards

patient-centred health care at community level, national and regional level and

to ensure that new sustainable development goals around healthcare are

operationalized.


I have experience with the work of IAPO in the past as I have attended their

regional workshops in Uganda in 2010, and IAPO Congresses in Budapest and

Istanbul in 2008 and 2010 respectively. I have participated a few surveys and

served in the organizing committee of IAOP Patient Congress in 2010. Have

just re-joined IAPO after a few years break and hope to get more involved in

IAPO events.

34

Durhane WONG-RIEGER

Member organization: Consumer Advocare Network


Size: National

Country: Canada

Website: http://www.consumeradvocare.org/

Biography

Durhane is a patient advocate, has two children with rare disorders, and PhD in

psychology. She is Chair of Consumer Advocare Network (patient engagement

in healthcare policy and advocacy), President of Canadian Organization for

Rare Disorders, CEO of Institute for Optimizing Health Outcomes (providing

health coaching and patient self-management) and Chair of Canadian Heart

Patient Alliance.

Internationally, Durhane is Chair of Rare Disease International (global patient

organization alliance), on The Patient- Patient Centred Outcomes Research

Editorial Board, on ISPOR Patient Representatives Roundtable and on HTAi

Patient /Citizen Involvement Interest Group. She is past-Chair of IAPO and

past-Board of DIA International.


Board?





messages


management


http://www.consumeradvocare.org/

35

Legal skills



Public speaking


I have two children with rare disorders and a husband with cardiovascular

disease, Parkinson’s, and a motility disorder and have advocated for diagnosis,

care, and treatment. I helped lead the fight on behalf of Canadians infected

with tainted blood and currently lead advocacy for Canada’s orphan drug

regulations, rare disease drug funding, and Rare Disease Strategy. I have

developed toolkits on health coaching, biosimilars, partnerships, advocacy, and

health technology assessment and provide training to patient groups around

the world. I collaborate with international patient organizations and currently,

as Chair of Rare Disease International, am working on global rare disease

policy.



Patient-centred care, as a concept, has become well accepted by many of the

health stakeholders, including governments, review agencies, industry and

healthcare providers. Now is the time for patient organizations to take a lead

in moving more deliberately to ensure that patients are prepared to take

advantage of opportunities and to push for genuine participation. IAPO has the

potential to lead the development of patient advocates and patient

organizations in training and preparation. At the same time, IAPO has a

favoured role in the WHO and United Nations Economic and Social

Development Committee to advance the patient role in established agencies

and institutions and to create patient engagement in various programs.

36


I have attended every IAPO conference since 2006 and have served on the

board since 2008. I was chair for one term, which included Chair-elect and

Past-Chair. I have conducted training workshops with IAPO in Latin America,

Asian and Africa from 2008 to 2015. I have also collaborated on the

development of training materials on patient partnerships, biosimilars, and

advocacy, starting with the partnership project in 2010, first biosimilars toolkit

in 2013, and second biosimilars toolkit and advocacy toolkit in 2017. I continue

to participate in IAPO-sponsored activities, including WHO meetings and

partner events, including the most recent WHO side meeting in 2017.

Documents

Governing Board Elections 2017 - IAPO Board... · Founder & President, IPSPI . Contributed in research of Biosimilars by IAPO. Actively advocated for the cause of PID and Universal