News related to rare disease, including patient stories, new programs and initiatives, and more.
CRDN welcomes the Government of Canada’s introduction of Bill S-5, the Connected Care for Canadians Act — a key building block for improved healthcare.
CRDN joined national leaders in medical genetics at the 2025 CAGC & CCMG Joint Conference in Banff, where members contributed to key discussions shaping the future of genomic medicine in Canada.
CRDN is featured in Open Access Government, highlighting its efforts to connect care, research, and lived experience to strengthen support for people living with rare diseases in Canada.
CRDN has launched a Rare Disease Awareness Days Calendar, a go-to guide for key dates to help raise awareness, spark advocacy, and connect our rare disease community year-round.
CRDN provided Health Canada with national insights and recommendations to advance early and equitable rare disease diagnosis.
When two siblings at the Stollery Children’s Hospital showed signs of a rare genetic disorder, the Translational Genomics Hub at the University of Alberta uncovered a novel gene variant that provided their family with a long-sought diagnosis.
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across Canada.
CRDN’s second Open Access Government article explores why data infrastructure must be treated as a core foundation of rare disease diagnosis, care, and discovery in Canada.
Georgina Grahame-King shares her experience of living with reactive hypoglycemia as a teenager and learning to advocate for herself.
CRDN has launched a new scholarship resource to help students and families affected by rare diseases discover educational funding opportunities from across Canada.
CRDN has launched the RAREvolution Scholarship Program, the first pan-Canadian, pan-rare disease scholarship initiative to support students living with rare diseases as they pursue post-secondary education.
CRDN has submitted a response to Health Canada, highlighting four key recommendations to ensure Canada’s clinical trial regulations are modern, proportionate, and supportive of rare disease research.
CRDN’s latest Open Access Government article explores why improving rare disease diagnosis in Canada requires not only broader access to genomics, but a more coordinated, learning-oriented health system.
