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Volunteer Advocate
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Why Canada Needs A Rare Disease Strategy

Approximately, one in every 3,600 children born in Canada has CF, making CF a rare disease. While each rare disease affects only a very few people, collectively, they affect nearly 3 million Canadians. That’s more than the number of Canadians with cancer, heart disease, or diabetes. But unlike these other chronic conditions, Canada has no comprehensive strategy to deal with rare diseases. So screening and diagnosis are dangerously delayed, access to specialists extremely limited, and standards of care mostly nonexistent. Rare disease is Canada’s biggest unaddressed public health challenge.

It is time to make Canada’s Rare Disease Strategy a reality.  The Canadian Organization of Rare Disorders (CORD), of which Cystic Fibrosis Canada is a member, released the Rare Disease Strategy following extensive consultations involving hundreds of diverse stakeholders, including patients, volunteer caregivers, healthcare providers, scientists, pragmatic financiers and idealistic dreamers to develop a strategy that is both ambitious and achievable. The plan draws on successful Canadian strategies for chronic diseases and national plans for rare diseases adopted in 30+ other countries.

Canada’s Rare Disease Strategy outlines a five-point action plan to address unnecessary delays in testing, wrong diagnoses and missed opportunities to treat rare diseases by:

  1. Improving early detection and prevention,
  2. Providing timely, equitable and evidence-informed care,
  3. Enhancing community support,
  4. Providing sustainable access to promising therapies and
  5. Promoting innovative research

Canada’s Rare Disease Strategy, launched by CORD on Parliament Hill in May 2015, calls on the federal and provincial governments to work together with the rare disease community to overcome barriers faced by individuals living with rare diseases, including long delays in diagnosis, problems accessing experts (especially across provinces), and timely access to treatments. The strategy also addresses the need for national standards for newborn screening for genetic disorders and dedicated funding for rare disease research in Canada.

All Canadian governments, in addition to individual Canadians and health system leaders, can find a role to play in implementing the plan. The national strategy formed the basis for the Ontario government’s approach to rare diseases. It’s helping catalyze and knit together reference networks that will help patients get the care they need, whether they live in downtown Toronto or Nanaimo, British Columbia.

“The strategy provides a plan we can implement now to ensure Canadians living with rare diseases have access to emerging drugs and other therapies that compare with the best in the world,” said Fred Horne, former Minister of Health in Alberta and moderator of the event. “Across Europe, governments have recognized that access to these treatments plays a critical role in high-performing health care systems.  It’s time for Canada to catch up.”

For more information on the Strategy for Rare Diseases please visit CORD’s website. To encourage the Government of Canada to adopt the Strategy for Rare Diseases, please write or email your Member of Parliament.

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