Canada’s Drug Agency has launched a new funding opportunity for rare disease registries to enhance their capability and implement improvement initiatives, to support decision-making in Canada related to drugs for rare diseases. This marks our second funding opportunity for rare disease registries, following the successful launch of last year’s inaugural open call for funding.

Through a Request for Proposals (RFP) process, we will provide time-limited funding to successful rare disease registry applicants who are working to improve their data quality, infrastructure, and capabilities to generate evidence for decision-making. Building on the previous open call, this year’s RFP aims to closely align with the evidence needs of federal, provincial, and territorial decision-makers and support registry improvements across a range of initiatives and registries that are focused on fit-for-purpose improvements. Refer to the RFP document for more details on the scope of this funding opportunity, submission guidelines, and evaluation and selection process.

On April 2, 2025, we held an information session to provide further details on our 2025–2026 Rare Disease Registry Request for Proposals and give rare disease registries the opportunity to ask questions during a live question and answer forum.  

View the presentation slides 

View the Recording