Not So Rare

By Max's Big Ride

With 3,667 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.

We Don’t Want To Disappear.

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

OUR STORIES

Max's Big Ride

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 devastating, beyond words, for Andrew and Kerri, Max’s parents. DMD is a rare disease, affecting mostly boys (1 in 3,500) and sometimes girls. There is no cure, and this degenerative muscle disease generally leads to a premature death, when young adults with DMD reach their 20’s or 30s. DMD is basically watching your child losing strength day after day.

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 a genetic counselor, her role was to educate people about diseases. In the case of this little girl, who had a disease with a complicated name, her research found very little information to give the family. Throughout her years of practice, she learned that most people with a rare disease are alone in their struggle with access to very few resources, especially in French.