News related to rare disease, including patient stories, new programs and initiatives, and more.
The RDI-Lancet Commission on Rare Diseases has officially launched, co-chaired by CRDN’s own Dr. Kym Boycott, to develop evidence-based policy solutions that enhance healthcare for Persons Living with a Rare Disease (PLWRD) worldwide.
Muscular Dystrophy Canada has launched a groundbreaking initiative offering no-cost genetic testing and counseling for individuals with suspected myotonic dystrophy, aiming to improve early diagnosis and access to life-changing treatments.
Ontario has signed an agreement with Health Canada under the National Strategy for Drugs for Rare Diseases! This $535 million investment will improve access to new and existing drugs for r rare diseases, while supporting early diagnosis and screening.
New Brunswick has become the fifth province to have signed an agreement with Health Canada under the National Strategy for Drugs for Rare Diseases. This commitment of over $32 million will help improve access to selected new drugs for rare diseases, and support enhanced access to existing drugs, early diagnosis, and screening.
The Government of Canada and province of Saskatchewan are investing over $40 million through the bilateral agreement to improve access to rare disease drugs, starting with Poteligeo, Oxlumo, and Epkinly, while enhancing early diagnosis and screening efforts.
CRDN proudly supports the WHA Resolution on Rare Diseases, aligning with our mission to advance care, research, and health equity for Canada’s rare disease community through global collaboration.
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across Canada.
CRDN proudly supports the WHA Resolution on Rare Diseases, aligning with our mission to advance care, research, and health equity for Canada’s rare disease community through global collaboration.
CRDN invites the rare disease community to take part in a survey to share feedback on our draft strategic plan, helping us ensure it meets the needs of the entire community.
The Patient and Community Engagement Research (PaCER) program is launching its January 2025 cohort, focusing on how rare diseases impact families. This unique, fully sponsored opportunity invites parents from across Canada to collaborate and share their experiences.
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