Governance

The RDI Council

The RDI Council is RDI’s governing body.

DURHANE WONG-RIEGER

RDI Council Chair

Canadian Organization for Rare Disorders (CORD)

Durhane is the President and Chief Executive Officer of the Canadian Organization for Rare Disorder (CORD). As an outspoken patient advocate, Durhane made a significant contribution to the haemophilia community following the contaminated blood scandal exposed in the early 90’s.

She began working with CORD as a volunteer in 2006 when she developed an Orphan Drug Policy and headed the advocacy campaign to improve access to new therapies for rare diseases. In 2012, Durhane became president of the Canadian organisation.

Durhane believes strongly in the value of international collaboration, serving on the Board of the International Alliance of Patients’ Organizations and as Chair from 2011-2013.

Through CORD, Canada was the first non-EU country to adopt Rare Disease Day in 2008. Durhane also took an active role in helping to set up the Asia-Pacific Alliance of Rare Disease Organisations (APARDO), serving as Secretary of the alliance. More recently, she was appointed as the President of APARDO.

Durhane has a PhD in psychology and, alongside her husband, has adopted two children, each born with different rare conditions.


YANN LE CAM

RDI Treasurer

EURORDIS-Rare Diseases Europe

Yann was one of the founders of EURORDIS-Rare Diseases Europe in 1997. He has been the organisation’s Chief Executive Officer since 2000. Through EURORDIS, Yann was a driving force behind the initiation of Rare Diseases International. In addition to serving as RDI Treasurer, he is Chair of the RDI Advocacy Committee.

Yann was a founding member of the NGO Committee for Rare Diseases (United Nations, New York) in 2014 and is its vice-chair. He is a co-chair of the Global Commission to End the Diagnostic Odyssey of Children with Rare Diseases since its launch in 2018. Yann is a member of the World Economic Forum’s Health Stewards Board from 2020 and of its Global Precision Medicine Council since 2019.

His recent past positions include: Member of the European Medicines Agency’s (EMA) Management Board 2016 – 2019; Chair of the Therapies Scientific Committee of the International Rare Diseases Research Consortium (IRDiRC), 2013-2017; Vice-Chairman of the EU Committee of Experts on Rare Diseases (EUCERD), 2011 – 2013; and a member of the former Commission Expert Group on Rare Diseases, 2013 – 2016. He was also one of the first patient representatives appointed to the Committee for Orphan Medicinal Products (COMP) at the EMA, where he served for 9 years and was its elected vice-chair for 6 years.

Yann holds an MBA from HEC Paris. He has three daughters, the eldest of whom is living with cystic fibrosis.


ALBA ANCOCHEA

Federacion Española de Enfermedades Raras (FEDER)

Alba is the Chief Executive Officer of FEDER, the Spanish rare disease alliance bringing together over 360 patient organisations. She leads a team undertaking specialised projects aimed at improving the quality of life of people living with a rare disease.

She currently serves on EURORDIS’ Board of Directors and is a member of the RDI Advocacy Committee. Her contribution to the Committee has been instrumental to RDI’s advocacy on Universal Health Coverage at the national and international level.

Alba is a committed advocate for regional and international rare disease collaboration, playing a role in multiple international bodies including the Iberoamerican Alliance for Rare Diseases (ALIBER) and IRDiRC’s Patient Advocacy Constituent Committee.


KELLY DU PLESSIS

Rare Diseases South Africa

Kelly is the Chief Executive Officer of Rare Diseases South Africa, an organisation that was born out of necessity when her oldest child was diagnosed with Pompe disease at 11 months old. 

Since starting Rare Diseases South Africa, Kelly has taken Rare Disease policy and patient advocacy to new heights in South Africa to raise awareness and create a new narrative in terms of treatment and access for rare disease patients. Understanding the isolation and lack of support surrounding a rare disease diagnosis, providing a safe place for patients as well as families, and improving patient-centred care has become her passion.

Kelly is a member of IRDiRC’s Patient Advocates Constituent Committee, and is currently involved in the development of Africa-Rare.org which she hopes to expand across the continent. Kelly lives in South Africa with her husband and two daughters.


RITU JAIN

DEBRA International

Ritu represents DEBRA International and is the President of DEBRA Singapore, the Epidermolysis Bullosa (EB) patient advocacy and support organisation that she helped establish in 2015.

Ritu’s focus has been to offer emotional and material support to patients and families, organise local and regional conferences for capacity building and improved delivery of EB care, and advocate for policy changes.

Ritu serves as a Director of Asia Pacific Association of Rare Disease Organizations, previously serving as a President, and is working towards strengthening and extending rare disease networks in the Asian regions.

Ritu has a daughter who lives with EB. She is passionate about empowering patients and families to fight for their rights and change what it means to live with a rare disease.


KIN PING TSANG

Rare Disease Hong Kong (RDHK)

Kin Ping is the President of Rare Disease Hong Kong. He is a patient advocate living with Retinitis Pigmentosa. His experience mobilising the rare disease community spans over two decades. In 1995, he founded Retina Hong Kong, a self-help organisation for patients with retinal degenerative diseases.

In 2014, he established the Hong Kong Alliance for Rare Diseases, now Rare Disease Hong Kong, to identify and address the gaps in patients’ needs and existing healthcare policy as well as advocate for access to diagnosis, treatment and care for rare disease patients.

Kin Ping serves as President of Retina Hong Kong and as Director of the Asia Pacific Association of Rare Disease Organizations (APARDO). His past positions includes Treasurer of APARDO and serving on the management committee of Retina International and as Treasurer of APARDO.


RACHEL YANG


China Alliance For Rare Diseases

Rachel represents the China Alliance for Rare Diseases (CHARD) and Illness Challenge Foundation (ICF).  A physician scientist by training, Rachel have been advocating for rare diseases since 2015, working to bridge the rare disease communities in China with their counterparts in the rest of the world.  

Rachel started volunteering at the Chinese Organization for Rare Disorders (CORD) in 2015, leading CORD’s international affairs. In 2016, Rachel led the CORD team to successfully win the bid to host the next ICORD Annual Conference in China in 2017.

Rachel is currently involved in the development of the CHARD, a multi-stakeholder national rare disease initiative launched in 2018. She is also involved with ICF, an organisation that is working to solve the urgent problems faced by people living with a rare disease by developing strong community, establishing support and research platforms, and promoting multilateral cooperation. 


RDI Statutes

Rare Disease International Statutes


RDI Bylaws

Rare Diseases International Bylaws