News related to rare disease, including patient stories, new programs and initiatives, and more.
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.
When two siblings at the Stollery Children’s Hospital showed signs of a rare genetic disorder, the Translational Genomics Hub at the University of Alberta uncovered a novel gene variant that provided their family with a long-sought diagnosis.
A new $800K partnership between SickKids and CHU Sainte-Justine is accelerating access to customizable treatments for children with rare genetic conditions. The ASO Connect project aims to identify eligible patients and design RNA-based therapies (ASOs) to improve outcomes through personalized care.
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across Canada.
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.
Learn more about the inaugural RareKids-CAN conference and how the network is transforming clinical trials for pediatric rare diseases 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.
