CIHR Rare Disease Research Initiative

Far from rare, rare diseases are an under-recognized global health priority. Rare diseases affect as many as 446 million people globally^{Footnote 1}. This figure would make “rare disease land” the world’s third most populous country.

There are thousands of different rare diseases that affect patients – most of whom are children – their families, and caregivers across the country. Unfortunately, rare diseases often take several years to diagnose and treatments are often only available for a small percentage of these conditions.

The CIHR Rare Disease Research Initiative (the Initiative) will fund rare disease research in Canada, supporting the establishment of a robust national rare disease clinical trials network as well as preclinical and implementation research. Overall, the aim is to increase collaboration across the rare disease community and improve the lives of patients living with rare disease and their families.

The Initiative is supported by funding announced in March 2023 to launch a National Strategy for Drugs for Rare Diseases. Through this National Strategy, CIHR was provided $32M over five years to advance rare disease research in Canada, and ultimately to improve the lives of patients living with rare diseases and their families.