SAVE RARE LIVES!

SAVE RARE LIVES!

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What Is Canada’s Rare Drug Challenge?

Patients in Canada with rare diseases have worse access to essential medicines

  • When compared to Canadians with other diseases!
  • When compared to rare disease patients in other countries!

Why Canada’s Rare Drug Challenge?

  • Canada is STILL the only developed country without an Orphan Drug Policy
  • Canada’s public drug plans list only about 30 – 40 % of rare disease therapies approved by Health Canada
  • Canada approves only about 60% of rare disease therapies … and up to 8 years later than elsewhere
  • Private drugs are increasingly denying coverage for rare diseases … claiming “pre-existent” conditions
  • Unlike 60+ other countries, Canada does not have a government-approved Rare Disease Strategy … there are no national standards for newborn screening and genetic testing … so it can take more than 7 years to get a diagnosis and get to a specialist
  • CORD launched Canada’s Rare Disease Strategy in 2015, which has helped drive provincial health systems and the federal government to action over the past seven years

We need the follow-through: formal adoption of Canada’s Rare Disease Strategy by the federal Prime Minister and provincial Premiers!

Canada from “Worse to First” in 2022!

  • The Canadian government committed $1 billion to set up Canada’s 1st Rare Disease Drug Strategy by 2022
  • With a modernized approval process, patients will get access to life-altering drugs when needed
  • Improved rare disease infrastructure means patients get a timely diagnosis and specialty care to avoid disability and early death

The provinces need to step up and use these new funds to benefit Canadians with rare diseases

* People who wish to donate to Change.org to support the platform should be aware that the contribution does not go to CORD. 

0 have signed. Let’s get to 2,500!
At 2,500 signatures, this petition is more likely to get picked up by local news!