Our Work

We believe that now is the time to act to provide hope and treatment to Canadians and their families who are impacted by a rare disease.

Right now, only 60% of treatments for rare disorders make it into Canada and most get approved up to six years later than in the USA and Europe.

People with rare disorders in Canada are missing out on treatments that could save or significantly improve their lives. This needs to change.

The Canadian Organization for Rare Disorders (CORD) has released Canada’s Rare Disease Strategy, developed with experts from every sector. 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 early death. These are the same challenges faced by Canadians with “non-rare” conditions, but the impact is often much more severe.

Why do we need Canada’s Rare Disease Strategy?

We believe that now is the time to act to provide hope and treatment to Canadians and their families who are impacted by a rare disease. Right now, the approach to rare diseases is fragmented across the country and this means Canadian families with rare illnesses are facing extraordinary challenges. These include misdiagnosis, unnecessary surgeries, social isolation, financial hardship, lack of treatment options and early death. These are the same challenges faced by Canadians with “non-rare” conditions but the impact is often much more severe.

About 1 in 12 Canadians, two-thirds of them children, are affected by a rare disease. But because each specific rare disease affects only a small number of individuals, scientific understanding and clinical expertise may be limited and fragmented across the country. We are asking that patients with rare diseases get the same kind of care and consideration as those with more common illnesses

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