News related to rare disease, including patient stories, new programs and initiatives, and more.
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.
Brain Canada has awarded a 2024 Platform Support Grant of $553,660 to Dr. Lawrence Korngut and the University of Calgary to expand the Canadian Neuromuscular Disease Registry (CNDR) into a cutting-edge, multi-modal open science platform.
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across Canada.
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.
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.
