Now Recruiting Patient Partners for our Rare Disease Registry Request for Proposals Evaluation Panel

In March 2025, Canada’s Drug Agency launched a 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. Through a Request for Proposals (RFP), this time-limited funding opportunity 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.

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.

Seeking Patient Partners to Join Our Evaluation Panel

To ensure resources are directed toward timely and impactful initiatives, we are convening a small, time-limited evaluation panel to review the submitted full proposals. As part of this panel, we are seeking a minimum of 2 Patient Partners with lived experience and patient-centred perspectives. These partners will play a key role in ensuring the patient perspective is meaningfully considered in the proposal review process. The review panel will also consist of Canada’s Drug Agency staff members and contracted methodology experts.

This opportunity is intended for individuals who:

• have experience supporting or living with a rare disease, either as a patient or caregiver
• can work and deliberate in a diverse group setting and appreciate the contributions of those with various backgrounds, skill sets, and experiences
• can act with integrity and transparency, independent of specific interests
• have strong English verbal communication skills.

To learn more about this opportunity and the knowledge and experience we’re seeking, and to apply, visit our website

What to Expect as a Patient Partner

• The review process will be collaborative and process-driven, involving participation in discussions with a diverse panel of reviewers.
• Patient Partners can expect a time commitment of up to 45 hours between May 2025 and June 2025, including an independent review of submitted proposals using a structured scoring rubric and participation in a virtual deliberation meeting.
• Remuneration will be based on our typical procurement practices (more details will be provided to those selected to move forward).

Involving patient partners ensures lived experiences inform our work, making it more relevant, inclusive, and impactful. Canada’s Drug Agency is committed to continuing to build these partnerships and elevating the perspectives of patients and individuals with lived and living experience across our work.