The Canadian Institute for Health Information (CIHI) aims to enhance the understanding of rare diseases by collecting and analyzing health data to inform policy and improve the healthcare system’s response to the unique needs of individuals with rare diseases in Canada. The disease areas of focus are diverse, encompassing genetic, metabolic, and rare pediatric disorders. CIHI generates and utilizes comprehensive real-world health data, including information on patient outcomes, healthcare utilization, and health system performance.

Patient Involvement: Patients are engaged in the utilization and generation of CIHI data by incorporating their lived experiences and perspectives, and CIHI offers a Patient Toolkit, a resource package for patients working with CIHI on a project.

Initiatives: In 2023-2024, CIHI announced $1.7 million in funding through the National Strategy for Drugs for Rare Diseases to improve access to promising and effective drugs for rare diseases for patients across Canada.

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