Canadians with rare diseases struggle to get diagnosis, access care

People with rare diseases are waiting too long for treatment with consequences that could be prevented. The Canadian Organization for Rare Disorders (CODR) found patients and their caregivers are facing delays and obstacles in areas including diagnosis, disease and knowledge information gaps, lack of access to drugs and lack of co-ordinated and accessible care. CODR’s survey shows 80% don’t think family physicians are aware and informed about rare diseases and 62% said the same about pediatricians, while 47% don’t believe specialists have up-to-date knowledge about rare diseases – with all these issues delaying diagnosis. CODR says Canada’s the only major developed nation without a comprehensive rare diseases strategy to support patients and families.
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