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Governing Board

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Update - Elections for Executive Officer Positions 2013
We are pleased to announce the election of IAPO’s Chair-Elect and Secretary to IAPO’s Executive Committee. Jolanta Bilinska has been appointed Chair-Elect and Eva Maria Ruiz de Castilla has been appointed Secretary; both for two year terms.  IAPO’s Governing Board and Staff would like to congratulate Jolanta and Eva Maria on their appointments. The elections took place during IAPO’s recent Governing Board Meeting in October 2013.

The IAPO Governing Board
The business and affairs of IAPO are supervised and directed by the Governing Board, which comprises the elected representatives of our Full and Associate Member organizations.  Governing Board Members can serve for a maximum of three terms. Terms are three years in duration.

The majority of our Governing Board are patients themselves, or are patient representatives (such as a parent or spouse).

The Board has two face-to-face meetings each year and are in ongoing communication with IAPO’s Staff.

The Executive Committee of the Governing Board consists of the Chair, Chair Elect (previously Vice-Chair), Secretary and Treasurer.  The Executive Committee is responsible for additional support to Staff between Governing Board meetings.

At present, the Governing Board is made up of the following representatives: 

Mr. Kin-ping Tsang - Hong Kong, China
IAPO Chair

Mr. Kin-ping Tsang founded Retina Hong Kong (RHK), a patients’ self-help organization, with fellow partners in March 1995 and has been serving as President of RHK since then. In 2003, KP was elected as a Member of the Executive Committee of the Alliance for Patients Mutual Help Organizations (APMHO) in Hong Kong and in 2005, he was appointed as APMHO Secretary. His major tasks were helping the Alliance to consolidate its internal management and develop external networks. He was elected to Chairman of APMHO in 2009 and substantially amended its Constitution by setting out the core mission as "Advocate for Patient-Centered Healthcare and promote Patient Engagement".
He is the Vice President of Hong Kong Guide Dogs Association, and an Honorary Fellow of the Hong Kong Academy of Pharmacy.

Mr. Tsang has been serving a number of committees and working groups in various bureaux and departments of the Hong Kong SAR Government.

KP has been elected to the Management Committee of Retina International from 2000 to 2006, and was re-elected to the board in 2012 again. He has been serving on the Board of AMD (Age-related macular degeneration) Alliance International since 2006.

KP is a retired business executive who is affected by Retinitis Pigmentosa, which causes severe visual impairment.

1st term (2008-2011)
2nd term (2011-2014)

Jolanta Bilińska – Poland
IAPO Chair Elect

Mrs Jolanta Bilińska has an M.A. in Clinical Psychology and is the Head of the International Cooperation Department, National Health Fund - Lodz. Jolanta used to diagnose hospitalised children and teenagers with personal disorders. In the early 90”s she started working for the regional newspaper – Dziennik Łódzki. She published almost 2000 articles concerning medical issues and politics. Jolanta's main focus was mainly on matters relating to patients’ rights and the way they are observed in the health care system. She also raised patients’ awareness of the health care system and is a public health expert.

Since the year 2004 Jolanta has performed the function of Coordinator concerning the European Union in the National Health Fund in Łódź. Since 2005 she has been a Patients for Patient Safety Champion part of World Health Organization (WHO) Patient Safety. In 2006 she established the Patient Safety Foundation. Its main aim is to promote safety measures in health service as well as to involve patients in the process of treatment, The foundation cooperates with the Ministry of Health, WHO officer and another non-governmental organizations which are regarding patients’ matters.

1st term (2009-2012)
2nd term (2012-2015)

Marc M. Boutin, Esq. - United States
IAPO Treasurer

Marc Boutin is the executive vice president and chief operating officer of the National Health Council, an organization that brings together all segments of the health care community to provide a united voice for the more than 133 million people with chronic diseases and disabilities and their family caregivers.

In addition to overseeing financial management and operations at the National Health Council (NHC), Boutin builds consensus among member patient advocacy organizations enabling them to speak with one voice on systemic health research and health care policy initiatives. This united effort results in legislation and regulations that address the collective needs of patients and their family caregivers. In addition, he provides guidance to patient organizations on various association issues, including corporate structure, government relations, fundraising, and outreach. Boutin is a regular spokesperson before the media, Congress, and policy makers on major issues of interest to the patient community.

Boutin has been actively involved in health advocacy, policy, and both federal and state legislation throughout his career. He is a member the International Alliance of Patients’ Organizations Governing Board, Community Health Charities Board of Directors, and has also served on Institute of Medicine committees, National Institute of Health panels, and the Agency for Healthcare Research and Quality’s stakeholder group.

1st term (2012-2015)


Durhane Wong-Rieger - Canada
IAPO Immediate Past Chair

Durhane has been on IAPO’s Governing Board since 2007; she served as Chair from 2011-13 and is Immediate Past Chair. She is on the Governing Board of DIA International and Co Chair of the Health Technology Assessment International Patient /Citizen Involvement Interest Group.  In Canada, she is the founder and head of the Consumer Advocare Network, a national network to provide a common voice for patients organizations. She is also president of the Canadian Organization for Rare Disorders, and President and CEO of the Institute for Optimizing Health Outcomes. .  She is a member of the Advisory Board for the Canadian Institutes of Health Research Institute of Genetics.

Dr. Wong-Rieger has conducted training, workshops, and evaluation for patient groups in Canada and internationally on all aspects of patient engagement and advocacy.  She has served on numerous health policy advisory committees and panels, including Project Coordinator for the Policy Dialogues for the Commission on the Future of Healthcare in Canada and consultant to the Ontario Premier’s Advisory Board on Organ Donation.

Dr. Wong-Rieger’s current research and publications include chronic disease self-management and health coaching, measuring quality of life, patient engagement in health technology assessment, and rare diseases/personalized medicines.

From 1984 to 1999, Durhane was professor of psychology at the University of Windsor in Ontario, Canada. Durhane has a BA in psychology from Barnard College in New York City and an MA and PhD in social psychology from McGill University in Montreal. She is author of two books and many articles and a frequent lecturer and workshop leader.

Durhane is married with two children, each with a rare health condition.

Read more about Durhane in her Member Story

1st term (2007-2010)
2nd term (2010-2013)

Final term (2013-2016) 

Eva Maria Ruiz de Castilla - Peru
IAPO Secretary 

Dr. Eva Maria Ruiz de Castilla is a co-founder and since 2006 Executive Director of ESPERANTRA, a not-for-profit cancer and chronic disease patient advocacy organization in Lima, Peru. Her work at Esperantra is to improve the quality of life of patients with chronic conditions, health promotion, and to advance the recognition of the rights of patients to achieve access to timely diagnosis, treatment, and follow-up care. She has been instrumental in a number of national initiatives focused on cancer, including the government’s Plan Esperanza launched in 2012 to provide basic cancer care coverage for the poorest and most vulnerable Peruvians.

In addition to her work with Esperantra, Eva Maria consults part-time for various Peruvian ministries, including Health, Social Development, Housing, Women, and Water-Sanitation to help design and coordinate the country’s public-sector social assistance programs. From 2011 to 2012, Eva Maria was Director General of the Peruvian Ministry of Health’s (MINSA) International Coordination office and before that served as MINSA’s Director General of Health Prevention and Promotion. She has in-depth experience working with donor country agencies and multilateral organizations such as the World Bank.

As a Board Member of the International Alliance of Patients’ Organizations (IAPO) since 2010, Eva Maria has been a global leader in patient-based organizational capacity building and has led various workshops on patient empowerment and networking. Her experience and involvement with building the capacity of civil society organizations focused on cancer in Peru earned her the American Cancer Society’s “Excelencia Latina 2009” Award. In 2011, Eva Maria was named a Global Cancer Ambassador by the American Cancer Society, and was invited by the World Health Organization to participate as a civil society representative during the UN High-Level Meeting on non-communicable diseases (NCDs).

Eva Maria’s academic credentials include degrees in Industrial Engineering and a PhD in Economic Development at the EHESS in Paris, France, and in Political Science at the Sorbonne University Paris 1. In Europe, she consulted for the United Nations on food and agriculture issues for the southern common market (MERCOSUR). Eva Maria has authored a number of publications and papers on social development, health, and citizen engagement, and has been invited to speak at more than 200 national and international congresses.

Read more about Eva Maria in her Member Story

1st term (2010-2013)
2nd term (2013-2016)


Carol Bennett - Australia

BA (Health Sciences), MA (Public Policy), MAICD  
Carol Bennett is the Chief Executive Officer of the Hunter Medicare Local – one of the largest not for profit primary health care organisations in Australia that aims to improve the health of local communities based on a model of strong consumer engagement.

Prior to this role, Carol was CEO of the Consumers Health Forum of Australia (CHF) – the peak national organisation for health consumers in Australia. She led CHF’s work to ensure a strong consumer voice and consumer participation in health reform through advocacy, policy development and consumer research.

Carol has worked at the executive level in health organisations for more than 15 years, including as CEO of peak national and state health bodies, and major consultancy roles with organisations including beyondblue the national depression initiative. She is a member of key national advisory bodies including Council Member of the National Health and Medical Research Council (Australia’s leading expert body promoting the development and maintenance of public and individual health standards). Carol works collaboratively with those at the most senior levels of government, as well as representatives from key health industry, professional and consumer groups and is committed to the role of non-government organisations as drivers of improved outcomes for their communities.

1st term (2012-2013)*
(Carol was elected onto IAPO's Board after Abdurrahman Ariman resigned and is finishing his term)
2nd term (2013-2016)

Hussain JafriMr Hussain Jafri - Pakistan

Hussain Jafri is the Secretary General and IAPO Representative of the Council for Alzheimer’s Pakistan, the national association of Alzheimer’s disease and related dementias. Hussain founded Alzheimer’s Pakistan in 1999 as a result of his experiences as a care giver for his grandfather with Alzheimer’s Disease.

Hussain runs his own tourism company and also works as a consultant in the medical field. He is working as Research Coordinator for University of Leeds, UK and Cambridge University, UK in a collaborative research program on gene location between Pakistan and the UK, funded by Wellcome Trust Grant. He is a keen researcher and has several international publications to his credit.

He also works closely with the government of Pakistan on various health issues. Hussain has run projects such as Safe Motherhood Initiative and Punjab Thalassaemia Prevention Program, which is which is one of the largest Thalassaemia prevention programs in the world. He is a WHO patients for patients safety champion (PFPS) and a PFPS representative of Eastern Mediterranean Region (EMRO).

Hussain has remarkable experience of working as a volunteer in the social sector and has had an opportunity of working with government, national and international non-profit organizations. Besides his commitment to IAPO, he is an active Board Member of numerous other organizations.

1st term (2005-2009)
2nd term (2009-2012)
Final term (2012-2015)

 
Robert Johnstone FRSA - United Kingdom

Robert has been on IAPO’s Governing Board since 2010. He is a trustee and IAPO representative from National Voices in the UK (a coalition representing more than 150 health & social care organizations).  Having had chronic rheumatoid arthritis for 58 years, he has not had a conventional career but has served on many charities representing disabled people and those with health challenges. For many years he was active in a network called People with Arthritis and Rheumatism in Europe (PARE) where he was involved in lobbying the European Parliament and senior policy makers to raise the profile of musculoskeletal conditions.  At a global level he served as President of Arthritis and Rheumatism International (ARi) and worked in the Bone and Joint Decades as a patient advocate.  Within the UK he helped the NHS develop Shared Decision Making materials for patients to empower them in relationships with health professionals & on the development of Personal Health Budgets to give people with chronic conditions financial autonomy to purchase healthcare.

1st term (2010-2013)
2nd term (2013-2016)


Regina MN KamogaMs Regina M.N Kamoga - Uganda

Regina has been on IAPO’s Governing Board since 2005. She is the Country Manager and IAPO representative for Community Health And Information Network (CHAIN) in Uganda ,an organization that promotes the empowerment of people living with and affected by HIV / Aids, TB, Malaria and Non Communicable Diseases (NCDs); supports Orphans and Vulnerable Children(OVC). CHAIN also promotes patient centered healthcare and patient safety.

Regina has a wide range of experience in project management and health care issues; she has been actively involved in activities addressing the plight of patients and particularly HIV/AIDS,TB, malaria and Non Communicable Diseases. Worked on capacity building for NGOs and CBOs in governance and policy issues, Health literacy and access, building and strengthening networks in collaboration with other organizations at the international, national and community level to address issues of patient safety and patient centered health care.

Regina has served on numerous health advisory committees, panels and boards at the national and international level. She is the chairperson of the Uganda Alliance of Patients Organisations (UAPO); board member of Joyce Fertility Support centre-Uganda; member of the external reference group for the impact assessment of the Access to Medicines index and    the regional coordinator for the Africa regional Network of patient organizations.

She served as a steering committee member on a WHO – based tropical disease research programme (TDR) focusing on emerging diseases. And  is one of  the authors  of the WHO-TDR report on Implementation Research for the control of diseases of poverty; strengthening the evidence base for the access and delivery of new and improved tools , strategies and interventions. She is also a Patient Safety Champion under the WHO Patient for Patient Safety (PFPS) programme.

She is also a member of the European Commission's DG Enterprise and Industry working group on "Local Capacity Building" in the framework of the Platform "Access to Medicines in Developing Countries with a Focus on Africa"  (which is part of the initiative "Process on Corporate Social Responsibility in the Field of Pharmaceuticals).

Regina holds a Masters degree in Public Administration & Management, Bachelor of Education from Makerere University, Kampala and Postgraduate Diploma in Project Planning & Mgt from Uganda Management institute, Kampala, Uganda.

1st term (2005-2008)
2nd term (2008-2011)
Final term (2011-2014)

Past Governing Board Members
There are many other individuals who committed much of their time and experience to establishing and developing IAPO through being part of our Governing Board.  This area is gives their details and is to acknowledge their hard work and vision.

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