We Don’t Want To Disappear.
Support children and adults with rare diseases now by signing our petition.
We’re not so rare.
Please sign our petition. Share with friends.
Tell our government: it’s time.
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.
OUR STORIES
Caring for People with Rare Diseases
In the early 2000s, Gail Ouellette was touched by the story of a family whose little girl suffered from a very rare bone disease. As
Hope For Children With Duchenne
In 2013, the Sedmihradsky family’s world came crashing down. Their son Max, 2 years old, was diagnosed with Duchenne muscular dystrophy (DMD). The news was
NEWS
Relaunch: Not So Rare Diseases Campaign
On November 12, Max’s Big Ride and his partners are relaunching Not So Rare campaign and petition. It was bad before. With the pandemic, now it’s worse. People afflicted with a rare disease have to navigate an overwhelmed health-care system. Forced to endure delays for the care they need to survive and thrive. MORE THAN EVER, IT’S TIME! Nowadays three million Canadians suffering from rare diseases keep on struggling to get a proper structure in our health system, in order to get the basic care they need to survive. The COVID-19 outburst has made things worse. Not only are they now in higher danger of suffering severe complications and dying if they’re infected by the Virus, but they also have to face a highly congested healthcare system focused on the pandemic. This means pushing back vital treatment. treatments or exams and threatening their lives even further more. Canada is one of the few developed countries without a national rare diseases strategy to guide diagnosis, treatment and management of rare diseases. A national strategy for rare diseases would support a plan for: Early
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