Diagnose Early… Treat Right!

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
  • Unlike 60+ other countries, Canada does not have a government-approved Rare Disease Strategy and it can take more than 7 years to get a diagnosis and see a specialist
  • There are no national standards for newborn screening and genetic testing
  • Private drugs plans are increasingly denying coverage for rare diseases by claiming “pre-existent” conditions

CORD launched Canada’s Rare Disease Strategy in 2015 and helped drive provincial health systems and the federal government to action.

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

Canada from “Worse to First” in 2022

  • 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 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

You Helped Before… We Need You NOW!

Your Support got us this far and now Your Voice is needed to ensure Canada delivers in 2022.


Share your support with your MP and provincial representative, along with national leaders:


Take 1 minute to increase your support on social media:

LinkedIn and Facebook

Suggested post:

I support the implementation of Canada’s Rare Disease Drug Strategy #Canada4Rare #saverarelives #support

Take 30 seconds to join the “call for action” by signing CORD’s petition on

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