CHEO Research Institute and Shriners Hospitals for Children Canada collaborate to launch first-of-its-kind joint pediatric metabolic and genetic bone disorders fellowship.

The bilateral agreement with Alberta under the National Strategy for Drugs for Rare Diseases will invest $162 million to improve access to selected drugs for rare diseases, and to support enhanced access to early diagnosis and screening.

Children with rare immune system disorders are finding hope through the Complex Immune Dysregulation Program at the University of Calgary and Alberta Children’s Hospital. Led by Dr. Ashish Marwaha, this innovative program brings together specialists to solve medical mysteries, providing rapid diagnoses, precision therapies, and a path forward for families.

The Canadian Institute for Health Information (CIHI) has released new analyses on two rare diseases: cystic fibrosis (CF) and Huntington disease (HD). These projects, which align with the National Strategy for Drugs for Rare Diseases, utilize CIHI data to generate real-world evidence regarding treatments for these conditions.

A collaborative team from the University of Calgary aims to identify new genes and mechanisms behind rare cardiovascular conditions to develop diagnostic tests and treatments.

The Governments of Canada and Newfoundland and Labrador have signed a $22 million agreement under the National Strategy for Drugs for Rare Diseases to improve access to treatments, enhance screening, and support early diagnosis for individuals with rare diseases.