News related to rare disease, including patient stories, new programs and initiatives, and more.
ALS Canada is investing in Access ALS, a new national initiative designed to expand Canada’s ability to conduct early-stage, Phase 1 clinical trials.
An early Canadian gene therapy study for Fabry disease has shown both clinical and economic benefits.
Researchers at the Vitalité Health Network are building the first province-wide genetic database in New Brunswick, aiming to improve early screening for inherited disorders like cystic fibrosis, sickle cell anemia, and Huntington’s disease.
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.
A new $800K partnership between SickKids and CHU Sainte-Justine is accelerating access to customizable treatments for children with rare genetic conditions. The ASO Connect project aims to identify eligible patients and design RNA-based therapies (ASOs) to improve outcomes through personalized care.
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across Canada.
CRDN joined leaders from across Canada at the RareKids-CAN Conference and co-hosted a mini workshop on pre-clinical therapy development.
On Rare Disease Day 2025, CRDN participated in national events, fostering collaboration, raising awareness, and sharing updates on progress thus far..
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.
