Caring for Rare: Canada's National Strategy

Last modified by Doug Maynard on 2019/02/28 14:54

Caring for Rare: Canada's National Strategy

In 2015, a collaboration of multiple stakeholders, led by the Canadian Organization for Rare Disorders, proposed Canada’s Rare Diseases Strategy with the vision of assuring Canadian patients with rare disorders had access to latest advancements in diagnosis, care, and treatment and Canadian researchers and clinicians were contributing to the advancement of knowledge and best practices. In 2016, Ontario endorsed setting up the first provincial Rare Disease Strategy. What is the vision and where are we today toward realizing the goals and objectives?


  • Overview: Status of rare disease in Canada and rest of the world
  • Shortening the diagnostic odyssey: new knowledge, new tools, new opportunities
  • Team approach to cart: connecting frontline to specialists and beyond
  • Re-imagining support communities: personal to virtual
  • Many more therapies treating many and curing some: is Canada ready?
  • New research models

DrWongRieger.jpgDurhane Wong-Rieger, PhD

Dr. Durhane Wong-Rieger is President & CEO of the Canadian Organization for Rare Disorders, chair of the Consumer Advocare Network, and President & CEO of the Institute for Optimizing Health Outcomes. Internationally, Durhane is Past-Chair of the International Alliance of Patient Organizations, Board Member of Rare Disease International, Member of Health Technology Assessment International Patient /Citizen Involvement Interest Group and Board Member representing patient interests at DIA International Association. She is a certified Health Coach and licensed T-Trainer with the Stanford-based Living A Healthy Life with Chronic Conditions.Dr. Wong-Rieger has served on numerous health policy advisory committees and panels and is a member of the Patient Liaison Forum for the Canadian Agency for Drugs and Technologies in Health. Durhane has a PhD in psychology from McGill University and was professor at the University of Windsor, Canada from 1984-1999. She is married and has two children. She is a trainer and frequent lecturer and author of three books and many articles.

Created by Andrew Tomayer on 2019/02/11 21:19