CRDN News
CRDN celebrates Rare Disease Day 2025
On Rare Disease Day 2025, CRDN participated in national events, fostering collaboration, raising awareness, and sharing updates on progress thus far..
March 2, 2025
News related to rare disease, including patient stories, new programs and initiatives, and more.
World-first ThinkRare algorithm helps family get early diagnosis of rare genetic disorder
CHEO’s groundbreaking ThinkRare algorithm is transforming rare disease diagnosis by flagging young patients who may benefit from genetic testing earlier.
February 28, 2025
Rare Disease News
Research shows path to easier diagnosis of mitochondrial disorders
University of Alberta researchers have found that urine testing could help diagnose mitochondrial diseases faster and more accurately, reducing the need for invasive muscle biopsies.
February 11, 2025
CRDN News
RDI-Lancet commission on rare diseases aims to drive global impact
The RDI-Lancet Commission on Rare Diseases has officially launched, co-chaired by CRDN’s own Dr. Kym Boycott, to develop evidence-based policy solutions that enhance healthcare for Persons Living with a Rare Disease (PLWRD) worldwide.
February 2, 2025
Rare Disease News
Muscular Dystrophy Canada launches initiative to improve genetic testing access for myotonic dystrophy
Muscular Dystrophy Canada has launched a groundbreaking initiative offering no-cost genetic testing and counseling for individuals with suspected myotonic dystrophy, aiming to improve early diagnosis and access to life-changing treatments.
January 27, 2025
Rare Disease News
Government of Canada signs bilateral agreement with Ontario for Drugs for Rare Diseases
Ontario has signed an agreement with Health Canada under the National Strategy for Drugs for Rare Diseases! This $535 million investment will improve access to new and existing drugs for r rare diseases, while supporting early diagnosis and screening.
January 24, 2025
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across Canada.
CRDN News
CRDN announces inaugural cohort of 2026 RAREvolution Scholars
Fifteen students living with rare diseases from five provinces haven been selected for the first RAREvolution Scholars cohort.
August 31, 2026
CRDN News
New Open Access Government article: Data infrastructure as the foundation of rare disease diagnosis
CRDN’s second Open Access Government article explores why data infrastructure must be treated as a core foundation of rare disease diagnosis, care, and discovery in Canada.
July 6, 2026
Patient Stories
Living with Reactive Hypoglycemia: Through the voice of Georgina
Georgina Grahame-King shares her experience of living with reactive hypoglycemia as a teenager and learning to advocate for herself.
July 2, 2026
CRDN News
New resource: Scholarship list for students living with rare disease
CRDN has launched a new scholarship resource to help students and families affected by rare diseases discover educational funding opportunities from across Canada.
May 31, 2026
CRDN News
CRDN launches first-ever rare disease student scholarship program in Canada
CRDN has launched the RAREvolution Scholarship Program, the first pan-Canadian, pan-rare disease scholarship initiative to support students living with rare diseases as they pursue post-secondary education.
April 29, 2026
CRDN News
CRDN submits response to Health Canada’s consultation on ‘Clinical Trial Regulations’
CRDN has submitted a response to Health Canada, highlighting four key recommendations to ensure Canada’s clinical trial regulations are modern, proportionate, and supportive of rare disease research.
April 20, 2026