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:
- Participate in a public town hall
- 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:
Director of Research and Advocacy