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.
Katherine Govier and her daughter Emily Honderich share their dual perspectives on living with and supporting someone with Xia-Gibbs syndrome.
CRDN was pleased to attend the first RARE.Qc Scientific Day and Annual General Meeting in Montréal, where the Québec community gathered for a dynamic day of rare disease research, collaboration, and community connection.
Dr. Manda Roddick’s journey of turning her lived experience with rare and complex conditions into research and advocacy that advances more equitable, person-centered care.
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.
