Canada’s Drug Agency Announces a New Round of Funding to Enhance Rare Disease Registries

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.

The current funding opportunity is part of a suite of work at Canada’s Drug Agency to support registries and help broaden the evidence landscape for assessing drugs for rare diseases in Canada. This work is undertaken in support of the Government of Canada’s National Strategy for Drugs for Rare Diseases.

Overview

Due to the nature of the funding strategy, this initiative is designed as a short-term contract opportunity rather than a long-term grant program. The timelines are structured to ensure that funds are awarded and fully used within the 2025 – 2026 fiscal year. As a result, all projects funded through this RFP must be completed by March 31, 2026. This approach ensures that resources are directed towards timely and impactful improvements to rare disease registries while aligning with broader funding objectives. The RFP application process involves 2 stages, whereby registry owners are first invited to submit a Letter of Intent to apply. We will then invite select registry owners who meet the eligibility criteria to submit a full proposal.

Key Dates of Interest

Funding launch: March 26, 2025
Information session: April 2, 2025
Letter of Intent deadline: April 16, 2025
Full proposal submission deadline (for select registries):  May 30, 2025
Public announcement of successful registries: September 2025

Upcoming Information Session

On April 2, 2025, we will hold 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.

Register now

Learn More

To learn more about this funding opportunity, visit our website.