News related to rare disease, including patient stories, new programs and initiatives, and more.
Although Rett syndrome is a rare and complex neurological disorder, advancements in clinical care and emerging therapies are offering new hope for patients and families.
A new AI-powered app—the Hypermobility Assessment Tool (HAT)—is transforming how Ehlers-Danlos Syndromes are screened in Canada by offering clinicians and patients a simple, accurate, and accessible way to assess joint hypermobility using only a smartphone.
New advances in RNA-based therapies are offering unprecedented hope for families affected by POLR3-related leukodystrophy, a devastating rare neurological disorder only understood for just over a decade.
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.
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.
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across Canada.
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.
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
