News related to rare disease, including patient stories, new programs and initiatives, and more.
Researchers at the University of Saskatchewan (USask) have published the first Canadian clinical guidelines for Spinal Bulbar Muscular Atrophy (SBMA), a rare hereditary neuromuscular disorder. These guidelines mark a milestone in advancing culturally responsive, multidisciplinary care for SBMA across Canada.
Children’s Hospital in London is transforming the future for kids with rare diseases through earlier diagnoses, innovative therapies, and access to clinical trials.
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.
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.
Neil Merovitch’s journey from a young patient navigating the complexities of rare diseases to a passionate advocate and researcher underscores the critical need for authentic patient engagement in healthcare and research.
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.
