News related to rare disease, including patient stories, new programs and initiatives, and more.
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.
The bilateral agreement with Alberta under the National Strategy for Drugs for Rare Diseases will invest $162 million to improve access to selected drugs for rare diseases, and to support enhanced access to early diagnosis and screening.
Children with rare immune system disorders are finding hope through the Complex Immune Dysregulation Program at the University of Calgary and Alberta Children’s Hospital. Led by Dr. Ashish Marwaha, this innovative program brings together specialists to solve medical mysteries, providing rapid diagnoses, precision therapies, and a path forward for families.
The Canadian Institute for Health Information (CIHI) has released new analyses on two rare diseases: cystic fibrosis (CF) and Huntington disease (HD). These projects, which align with the National Strategy for Drugs for Rare Diseases, utilize CIHI data to generate real-world evidence regarding treatments for these conditions.
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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