Dr. Durhane Wong-Rieger

President & CEO, Canadian Organization for Rare Disorders

The Promise & Challenges of Treating Rare Disease



DURHANE WONG-RIEGER, PHD is Chair of Rare Disease International, Board member of Asia Pacific Rare Disease International, member of the Editorial Board of The Patient- Patient Centred Outcomes Research, member of the Global Commission to End the Diagnosis Odyssey for Rare Diseases and member of Health Technology Assessment International Patient /Citizen Involvement Interest Group.  In Canada, she is President & CEO of the Canadian Organization for Rare Disorders, Chair of the Consumer Advocare Network, President & CEO of the Institute for Optimizing Health Outcomes and Chair of Canadian Heart Patient Alliance.  She is a certified Health Coach.

Dr. Wong-Rieger has served on numerous health policy advisory committees and panels and is a member of Ontario’s Rare Disease Implementation Working Group, member of Genome Canada Steering Committee for the Rare Disease Precision Health Initiative and member of the Patient Liaison Forum for the Canadian Drugs and Technologies in Health.

Durhane has a PhD in psychology from McGill University and was professor at the University of Windsor, Canada.  She is a trainer and frequent lecturer and author of three books and many articles.



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