In Canada, 1 in 12 people are afflicted with a rare disease. That amounts to 3 million people, and two-thirds are children. Together, people with rare diseases are not so rare. Canada is one of the few developed countries without a national rare diseases strategy to guide diagnosis, treatment and management of rare diseases.
People with rare diseases in Canada, mostly children, miss out on timely and affordable access to new therapies and supportive care that helps them to survive and thrive.
Our national appeal, “Not so rare”, calls on governments to implement a national strategy for rare diseases as fast as possible – because diseases don’t wait!
A national strategy for rare diseases would support a plan for:
● Early diagnosis
● Faster access to promising new therapies
● Fair and equal access to supportive care and effective disease management strategies
● Ending the inefficient, two-tiered, federal-provincial system for drug marketing approval and reimbursement of costs for orphan drugs
A national strategy is the first step to providing the promising new treatments and supportive care that people with rare diseases desperately need.