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First Ever Rare Disease Strategy Released for Canadians

Canadian Organization for Rare Disorders (CORD) is calling for nation-wide action to combat and prevent rare forms of illness.

On Monday, CORD released Canada’s first Rare Disease Strategy (CRDS) and is now requesting assistance at the federal and provincial level, as well as from healthcare providers and researchers, to help successfully implement the plan.

Approximately one in 12 Canadians, two-thirds of whom are children, are affected by a rare disorder. However, considering each specific rare disease affects only a small number of individuals, the scientific research and resources dedicated to understanding a specific disease is fragmented.

In light of this issue, CORD created a five-point action plan that will address unnecessary delays in testing, wrong diagnoses, and missed opportunities to provide treatment:

  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.

"We cannot continue to treat rare diseases one at a time, said CORD President Durhane Wong-Rieger. “With more than 7,000 rare diseases, Canada needs a comprehensive approach. Together, we can ensure the nearly 3 million Canadians living with rare disorders have the same access to treatment and support as those with more common illnesses."

The strategy was prepared by CORD and details the significant burdens faced by Canadian families with rare illnesses. Common challenges include misdiagnosis, unnecessary surgeries, social isolation, financial hardship, lack of treatment options, and early death.

"Growing up with a rare condition can be very isolating," said Kate White of Ottawa who has Gaucher disease, as does her sister Meghan. "My sister and I were able to support each other. A national strategy will provide a life-line connecting patients with the right healthcare professionals and also each other."

"We need to take the same co-ordinated approach to rare disorders as is currently being done for cancer, mental illness and other conditions," said Wong-Rieger. "Globally, more than 35 nations have or are developing rare disease strategies. Canada has a world-leading health care system but we need to act strategically to make it work for patients with rare diseases."



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