News related to rare disease, including patient stories, new programs and initiatives, and more.
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.
CHEO Research Institute and Shriners Hospitals for Children Canada collaborate to launch first-of-its-kind joint pediatric metabolic and genetic bone disorders fellowship.
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across Canada.
CRDN, alongside MICYRN and RareKids-CAN, will support the newly launched European Rare Diseases Research Alliance (EDERA), ensuring that Canada’s rare disease landscape is aligned with international efforts.
CRDN participated in a two-day Alberta Rare Disease (RD) Design Framework workshop to develop recommendations to help guide the creation of a comprehensive care framework in Alberta.
CRDN participated in annual NMD4C investigator meeting to share insights and explore synergistic efforts in the innovative therapy space in Canada.
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