News related to rare disease, including patient stories, new programs and initiatives, and more.
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.
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.
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.
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.
New Brunswick has become the fifth province to have signed an agreement with Health Canada under the National Strategy for Drugs for Rare Diseases. This commitment of over $32 million will help improve access to selected new drugs for rare diseases, and support enhanced access to existing drugs, early diagnosis, and screening.
The Government of Canada and province of Saskatchewan are investing over $40 million through the bilateral agreement to improve access to rare disease drugs, starting with Poteligeo, Oxlumo, and Epkinly, while enhancing early diagnosis and screening efforts.
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across Canada.
This comprehensive calendar is a one-stop-shop for rare disease-related happenings in Canada and beyond, including webinars, workshops, conferences and more.
Learn more about the inaugural RareKids-CAN conference and how the network is transforming clinical trials for pediatric rare diseases in Canada.
The inspiring journey of Madison and Beth Vanstone, tirelessly advocating for public funding for the first cystic fibrosis modulator in 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 courageous story of Sylvie Tress, navigating multiple painful conditions and the impact of late diagnosis on her health, while finding strength and purpose in advocacy.
The launch of RDI’s Mapping Rare project shines a spotlight on Canada’s contributions to the global rare disease community.
