News related to rare disease, including patient stories, new programs and initiatives, and more.
The Canadian Institute for Health Information (CIHI) has released new analyses on two rare diseases: cystic fibrosis (CF) and Huntington disease (HD). These projects, which align with the National Strategy for Drugs for Rare Diseases, utilize CIHI data to generate real-world evidence regarding treatments for these conditions.
A collaborative team from the University of Calgary aims to identify new genes and mechanisms behind rare cardiovascular conditions to develop diagnostic tests and treatments.
The Governments of Canada and Newfoundland and Labrador have signed a $22 million agreement under the National Strategy for Drugs for Rare Diseases to improve access to treatments, enhance screening, and support early diagnosis for individuals with rare diseases.
Canada’s Drug Agency, in collaboration with the Institute for Clinical Evaluative Sciences (ICES) and the Health Data Research Network Canada (HDRN), has released a roadmap to help patient and disease registry teams link data with health services records, advancing rare disease research and care.
A recent study published in Science has identified crucial genetic mutations in the TRiC chaperonin complex linked to severe brain malformations, offering new diagnostic and treatment possibilities for rare disease patients worldwide, with 22 individuals diagnosed so far through international collaboration led by Dr. Hanns Lochmüller.
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.
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across Canada.
Participate in CRDN’s Social Media Survey to share your valuable insights and help us create content that resonates with the rare disease community in Canada.
The launch of RDI’s Mapping Rare project shines a spotlight on Canada’s contributions to the global rare disease community.
February 29, 2024, marks a momentous day for the Canadian Rare Disease Network (CRDN) as we embark on our official launch, dedicating ourselves to advancing rare disease care, research, and innovation.
Subscribe to our monthly newsletter Rare Insights to receive the latest news, updates, and events.
