The Canadian Organization for Rare Disorders (CORD) has released Canada’s rare disease strategy.
It’s calling upon the federal, provincial and territorial governments along researchers, healthcare providers, educators, employers, and the patient community to join forces to make the strategy a reality.
“We cannot continue to treat rare diseases one at a time, says CORD president Durhane Wong-Rieger. “With more than 7,000 rare diseases, Canada needs a comprehensive approach. Together, we can ensure the nearly three million Canadians living with rare disorders have the same access to treatment and support as those with more common illnesses.”
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The strategy, prepared by CORD with experts from every sector 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.
About one in 12 Canadians, two-thirds of them children, are affected by a rare disorder. 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.
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