Governance

Statutes

Rare Disease International Statutes

Council

DURHANE WONG – RIEGER

Canadian Organization for Rare Disorders (CORD)

Durhane made a significant contribution to the haemophilia community following the tainted blood scandal, serving as president from 1994-98. She began working with CORD as a volunteer in 2006 when she developed an Orphan Drug Policy and headed the advocacy campaign to access to new therapies. 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.

She joined EURORDIS to learn as much as possible from European initiatives. Canada has benefitted from this association and 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 Organizations, 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.

 

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 organization 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 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 organization 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 organizational partnerships. She has successfully forged and strengthened relationships with patient communities in Canada, Europe, Australia, Asia, India and the United Arab Emirates.

As part of her commitment to supporting the global advancement of rare diseases, Lisa serves on the governing council for RDI.


YANN LE CAM

EURORDIS-Rare Diseases Europe

Yann was one of the founders of EURORDIS-Rare Diseases Europe in 1997. He is the organisation’s Chief Executive Officer since 2001. Yann initiated Rare Diseases International in 2009. He is an elected member of the RDI Council and Chair of the RDI Advocacy Committee. He is a founding member of the NGO Committee for Rare Diseases in 2014 and a member of its Executive Committee.

Since 2016, Yann Le Cam is a member of the Management Board of the European Medicines Agency. 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.


RITU JAIN

DEBRA International

Ritu is president of DEBRA Singapore, the Epidermolysis Bullosa (EB) patient advocacy and support organization 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 has been an engaged member of the RDI council since 2017. She has actively contributed to drafting RDI’s strategy plans, objectives and bylaws and is working towards strengthening and extending the Rare network in the Asian regions.

Beyond her volunteer roles, Ritu is a sociolinguist and teaches graduate and under-graduate students at a local university.


KIN PING TSANG

Retina International

Kin Ping, a retired business executive with Retinitis Pigmentosa, has been actively volunteering for patients’ groups for some decades, both in Hong Kong and internationally. In March 1995, along with fellow patients, he founded Retina Hong Kong, a self-help organisation for patients with retinal degenerative diseases; he has been the association’s serving President since then.

Kin Ping is also President of the Hong Kong Alliance for Rare Diseases, the Vice-Chairman of Hong Kong Patients’ Voices (an advocacy platform in the healthcare sector), a board member of AMD Alliance International, and he has been serving on the management committee of Retina International since 2000.


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 for hosting the next ICORD Annual Conference in China. And subsequently in 2017, as the Program Co-chair, she played the critical “ambassador” role coordinating among the three hosting organizations, together delivering one of the most successful ICORD annual conferences – 2017 ICORD Beijing Conference.


Jesús Navarro

Alianza Iberoamericana de Enfermedades Raras o Poco Frecuentes (ALIBER)

Jesús is founder and president of MPS JAJAX A.C., an organization that helps patients with different types of mucopolysaccharidosis and other lysosomal diseases.

In 2011 he founded the Organization Mexicana de Enfermedades Raras (OMER), a network of organizations that represents patients with rare diseases across the country. Jesús has also served as the Vice President of ALIBER and is currently a member of the group of experts on rare diseases in Latin America.

Jesús lives in Guadalajara, Mexico, with his family Ana, Yamila, and Ximena who lives with MPS I (Hurler syndrome).