The Canadian Rare Disease Directory

Developed in partnership with Takeda Canada our platform is dedicated to fostering connections, raising awareness, and sharing valuable information about organizations making impactful contributions to the rare disease community in Canada.

Discover concise profiles and direct links to organizations actively engaged in rare disease research, treatment, and innovation across Canada. Our aim is to establish this platform as a valuable resource, simplifying navigation through the intricate landscape of Rare Disease Research in Canada


Genome Canada

Genome Canada aims to advance research and enhance genomic knowledge to improve the diagnosis, treatment, and understanding of rare diseases, leading to better health outcomes for affected...

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Health Data Research Network (HDRN)

The Health Data Research Network (HDRN) in Canada brings together people and provincial, territorial, and national data organizations across Canada for transformative and world-leading health data...

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Inform Rare

Inform Rare is a Canadian research network co-designed by diverse stakeholders. The organization evaluates therapies, develops research methods, and aims to improve the care, outcomes, and policies...

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