News related to rare disease, including patient stories, new programs and initiatives, and more.
U of A team identifies a peptide additive that improves the effect of existing genetic therapies for the most common type of the neuromuscular disease.
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.
ALS Canada is investing in Access ALS, a new national initiative designed to expand Canada’s ability to conduct early-stage, Phase 1 clinical trials.
An early Canadian gene therapy study for Fabry disease has shown both clinical and economic benefits.
Researchers at the Vitalité Health Network are building the first province-wide genetic database in New Brunswick, aiming to improve early screening for inherited disorders like cystic fibrosis, sickle cell anemia, and Huntington’s disease.
CRDN provided Health Canada with national insights and recommendations to advance early and equitable rare disease diagnosis.
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across Canada.
The Patient and Community Engagement Research (PaCER) program is launching its January 2025 cohort, focusing on how rare diseases impact families. This unique, fully sponsored opportunity invites parents from across Canada to collaborate and share their experiences.
CRDN, alongside MICYRN and RareKids-CAN, will support the newly launched European Rare Diseases Research Alliance (EDERA), ensuring that Canada’s rare disease landscape is aligned with international efforts.
CRDN participated in a two-day Alberta Rare Disease (RD) Design Framework workshop to develop recommendations to help guide the creation of a comprehensive care framework in Alberta.
CRDN participated in annual NMD4C investigator meeting to share insights and explore synergistic efforts in the innovative therapy space in Canada.
CRDN is hosting a virtual townhall on October 31 to provide an update on the co-development of its strategic plan.
This comprehensive calendar is a one-stop-shop for rare disease-related happenings in Canada and beyond, including webinars, workshops, conferences and more.
