News related to rare disease, including patient stories, new programs and initiatives, and more.
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.
Health Canada has released guidance on expanded access clinical trials, a regulated pathway that allows patients to access investigational drugs when standard clinical trials are not available or suitable.
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.
U of A team identifies a peptide additive that improves the effect of existing genetic therapies for the most common type of the neuromuscular disease.
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.
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across 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.
The Canadian Rare Disease Innovation Showcase brought together powerful stories and cutting-edge science—from AI diagnostics to patient-led research—to inspire bold action across Canada’s rare disease community
