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Dr. Durhane Wong-Rieger is the President and CEO for the Canadian Organization for Rare Disorders. She is involved and Chair to many committees and organizations. She is also an author, lecturer and trainer. She is the perfect person to talk with about making healthcare a level playing field for all. As you know we have interviewed so many people on this podcast talking about the challenges in different countries to medications. In Egypt the Ministry of health doesn’t recognize the disease, CF families there don’t have the basics like liquid vitamins for their infants. In Thailand, it’s the same, in India, infants are dying before they’re even diagnosed, in Pakistan, families can’t get drugs. And on and on.

Dr. Wong-Rieger recently presented at the World Health Organization, Essential Medicines Open Forum in regard to low- and middle-income countries access, or lack of it, to drugs.

Rare Disease International has done some research about this issue that Durhane will share with us. Dr. Wong-Riegers organization has proposed to WHO for a collaboration on Essential Medicines for rare disease which ties to her collaboration on global rare disease networks.

There is an initiative the P-Q-M-D or Project for Quality Medicinal Donations that has been trying to launch on “donations to sustainability” that they are recruiting companies and donor foundations to try to support. This development of the initiative is now in Stage 2 of the feasibility work.

There are models out there for global work like the World Federation of Hemophilia and International Gaucher Foundation. There is no international CF organization so far, and we will discuss that here.

She is Chair of Rare Disease International, Chair 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 Centered Outcomes Research, member of the Global Commission to End the Diagnostic Odyssey for Rare Diseases 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 Ontario’s Rare Disease Implementation Working Group and 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.

Producer: Beth Vanstone. If you’d like to be featured contact her at: beth@thebonnellfoundation.org

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