Governance

RDI Statutes

Rare Disease International Statutes

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RDI Bylaws

Rare Diseases International Bylaws

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The RDI Council

The RDI Council is RDI’s governing body

DURHANE WONG-RIEGER

Canadian Organization for Rare Disorders (CORD)

As an outspoken patient advocate, Durhane made a significant contribution to the haemophilia community following the contaminated blood scandal exposed in 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 CORD.

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 newly registered alliance.

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


YANN LE CAM

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 2001. Through EURORDIS, Yann was a driving forces behind the initiation of Rare Diseases International in 2009.

For four years Yann Le Cam was a member of the Management Board of the European Medicines Agency. His recent past positions include: 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 Commission Expert Group on Rare Diseases, 2014 – 2017. 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.


LISA SARFATY

National Organization for Rare Disorders (NORD)

Lisa joined NORD in 2011 and serves as the Director of Strategic Planning and Project Development. In this role she is responsible for strengthening the development of strategic and operational plans that support the organisation in pursuing innovative and promising ideas. She works closely with NORD’s Board of Directors, executive management team, staff and external partners, both nationally and internationally, to align short and long-term strategies for program development and growth.

Lisa also manages NORD’s participation in key international forums and organisational partnerships. She has successfully forged and strengthened relationships with patient communities in Canada, Europe, Australia, Asia, India and the United Arab Emirates.


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 Ibero- American Alliance of Rare Diseases (Aliber) and IRDiRC’s Patient Advocacy Constituent Committee.


RITU JAIN

DEBRA International

Ritu is 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.

She is the President of the Asia Pacific Alliance of Rare Disease Organisations (APARDO) and is working towards strengthening and extending rare disease networks in the Asian regions.


KIN PING TSANG

Rare Disease Hong Kong (RDHK)

Kin-Ping 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. He established the Hong Kong Alliance for Rare Diseases, now Rare Disease Hong Kong, in 2014 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 on the management committee of Retina International and was appointed Treasurer of the Asia Pacific Alliance for Rare Disease Organisations (APARDO) in 2019.


RACHEL YANG

Chinese Organization for Rare Disorders

A physician scientist by training, Rachel has been in charge of CORD’s international affairs since 2015, representing CORD on the global stage, and bridging CORD and the rare disease communities in China with their counterparts in the rest of the world.

In 2016, Rachel led the CORD team to successfully win the bid to host the next ICORD Annual Conference in China in 2017

She is currently involved in the development of the China Alliance for Rare Disease (CARD), a multi-stakeholder national rare disease initiative launched in 2018.