About this Webinar:
On March 22, the federal government announced the first national drug strategy for rare diseases. But what will this strategy actually do? Having led the multi-stakeholder consultations for the past three years, the Canadian Organization for Rare Disorders is offering a Rare Disease Framework and Blueprint for Action with three key pillars and two foundational platforms directed to assuring optimal return on the investment to patients and families as well as the healthcare system and society.
About this Presenter:
DURHANE WONG-RIEGER, PHD is the 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.
Internationally, she is Chair of Rare Disease International, President of Asia Pacific Rare Disease International, Treasurer of United Nations Nongovernmental Organization for Rare Diseases, Chair of Patient Advocates Constituency Committee of the International Rare Disease Research Consortium, Patient Advisor to the APEC Rare Disease Network, member of the Editorial Board of The Patient- Patient Centred Outcomes Research, and member of Health Technology Assessment International Patient /Citizen Involvement Interest Group.
Dr. Wong-Rieger has served on numerous health policy advisory committees and panels and is a member of Genome Canada Steering Committee for the Rare Disease Precision Health Initiative. She is a certified Health Coach. 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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