Canada’s Rare Disease Strategy, Moving Forward

By: Durhane Wong-Rieger, PhD


There is a renewed optimism in the Canadian rare disease community about the potential development of a Pan-Canadian rare disease strategy. While incremental steps have been made over the last decade, we are hopeful that now is the time that meaningful action will be taken by both the federal government, and the ten provincial and three territorial governments to ensure that Canadians with rare disorders are getting the treatments they need to improve their lives.

Rare diseases affect about 1 in 12, or approximately 3 million Canadians, including about 2 million children. But because each specific rare disease affects only a small number of individuals, scientific understanding and clinical expertise tend to be limited and fragmented across the country.

In conjunction with experts from across the country, the Canadian Organization for Rare Disorders (CORD) has released Canada’s Rare Disease Strategy. One thing that all parties agreed upon is that the current system is not working for patients. The Strategy was designed as a blueprint for governments, pharmaceutical companies and advocacy groups to ensure treatment options are accessible and quality of life is improved for Canadians with rare disease.

The Strategy details the extraordinary burden faced by Canadian families with rare illnesses. Challenges include misdiagnosis, unnecessary surgeries, social isolation, financial hardship, lack of treatment options and even early death. These are the same challenges faced by Canadians with “non-rare” conditions, but the impact is often much more severe.

Key Goals for Canada’s Rare Disease Strategy
There are five goals which CORD identified as critical to develop a truly Canadian rare disease strategy.

  • Improving early detection and prevention
  • Providing timely, equitable and evidence-informed care
  • Enhancing community support
  • Providing sustainable access to promising therapies
  • Promoting innovative research

Although these five goals are not unique to Canada, there are conditions within Canada that will directly impact the necessary steps needed to reach them. The Strategy provides detailed context and specific gaps in the current system and comprehensive actions needed to attain each of these goals.

Although there is still much work to be done on implementing the Rare Disease Strategy for Canadians, I believe that conditions are right for Canada to become a world leader in rare disease research, development of new therapies and treatment to improve the lives of those living with rare disease. Working together we can make the Strategy happen and the patient voice heard!




About the Author:

Durhane Wong-Rieger, PhD

Durhane Wong-Rieger is the President and CEO of Canadian Organization of Rare Disorders. Durhane has served on numerous health policy advisory committees and panels and is a member of the Advisory Board for the Canadian Institutes of Health Research Institute of Genetics and the Patient Liaison Forum for the Canadian Drugs and Technologies in Health. Durhane is immediate Past-Chair of the International Alliance of Patient Organizations, and Board Member representing patient interests at DIA International Association. She has a PhD in psychology from McGill University. Durhane can be reached at (416) 969-7464 or info@raredisorders.ca.

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