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Defeat Duchenne Canada: The Government of Canada establishes Rare Disease Advisory Group

October 31, 2023

As part of the National Strategy for Drugs for Rare Diseases announced in March 2023, the Government of Canada committed to establishing a national governance structure to support the implementation of the National Strategy and to help improve consistent access and affordability of effective drugs for rare diseases across the country.

Defeat Duchenne Canada is pleased to share that the Implementation Advisory Group (IAG) has been created and includes approximately 20 members from across the rare disease community, including those with lived experience and those who provide or who work to improve care for patients, such as clinicians, the pharmaceutical industry and researchers

The IAG will provide advice to Health Canada and other health system partners on the implementation of the Strategy and be a forum to exchange information and best practices on drugs for rare diseases. This is a continuation of the dialogue underway since consultations began in 2021 with rare disease patients and patient organizations, like Defeat Duchenne Canada, and those who play a key role in enabling access to drugs for rare diseases (DRD) and providing care.

Their first meeting occurred on October 26, 2023, and we look forward to sharing regular updates with our Duchenne and Becker community.