Jesse's Journey Foundation

Defeat Duchenne. Change Lives.

Health Canada: Recommendations for National Rare Disease Strategy

Over the last month, Health Canada has opened up a consultation for organizations like Jesse’s Journey, to provide recommendations on a discussion paper outlining ways to address access to high-cost rare disease drugs in Canada.

There were three different ways to respond:

  1. Questionnaire
  2. Participate in a public town hall
  3. Written submission

Jesse’s Journey submitted input into the questionnaire, engaged in four town halls, and completed a written submission in collaboration with Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C).

Response to the Federal Government on Building a National Strategy for High-Cost Drugs for Rare Diseases

We’re proud to represent the Canadian Duchenne community in consultation with Health Canada on a rare disease strategy. For more information, please contact:

Nicola Worsfold

Director of Research and Advocacy

[email protected] 

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