We Don’t Want To Disappear.

Support children and adults with rare diseases now by signing our petition.

With 3,906 supporters

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.

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Tiktok SMA Challenge

A challenge to save lives Yan Défossé,  father of Liam, a young boy afflicted with the disease launched the “Tiktok SMA challenge”. In short, SMA is a degenerative neuromuscular disease that causes muscles to get weak, shrink or even die. Fortunately for Liam, who is in Quebec, he is receiving a treatment that stops the progression of SMA. Unfortunately, the same treatment is not available  in all provinces, so some people have access and others do not, because Canada does not have a national strategy for rare diseases. Even though the disease is fatal and relentless many are left out without the only treatment that can stop the degeneration. The “Tiktok SMA Challenge” was created to gather as many signatures as possible for the Not So Rare petition which calls for a national  rare disease strategy. Yan and Liam also invite you to participate in a fun video challenge to raise awareness about rare diseases. Here is how to do it! Take part in a fun video contest  For Liam, who is now 8 years old, every small daily activity is difficult.

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