News related to rare disease, including patient stories, new programs and initiatives, and more.
Five parent caregivers from across Canada have completed a year-long research training program, bringing their lived experience to a study exploring strength, support, and well-being among families affected by rare diseases.
CRDN’s third Open Access Government article explores why Canada must invest in the people, expertise, and clinical systems needed to turn genomic advances into timely and equitable rare disease diagnosis.
CRDN was pleased to attend the 2026 NMD4C Annual Meeting in Calgary, bringing together members of the neuromuscular disease community for a full day of research updates, strategic discussions, collaboration, and connection.
Jessica Head reflects on what EURORDIS’ Data, Ethics and AI training revealed about trust, accountability, and the importance of patient perspectives in shaping responsible rare disease data and AI systems.
Fifteen students living with rare diseases from five provinces haven been selected for the first RAREvolution Scholars cohort.
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.
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across Canada.
Five parent caregivers from across Canada have completed a year-long research training program, bringing their lived experience to a study exploring strength, support, and well-being among families affected by rare diseases.
CRDN’s third Open Access Government article explores why Canada must invest in the people, expertise, and clinical systems needed to turn genomic advances into timely and equitable rare disease diagnosis.
CRDN was pleased to attend the 2026 NMD4C Annual Meeting in Calgary, bringing together members of the neuromuscular disease community for a full day of research updates, strategic discussions, collaboration, and connection.
Jessica Head reflects on what EURORDIS’ Data, Ethics and AI training revealed about trust, accountability, and the importance of patient perspectives in shaping responsible rare disease data and AI systems.
Fifteen students living with rare diseases from five provinces haven been selected for the first RAREvolution Scholars cohort.
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.
