CORD is inviting expressions of interest for a new Rare Disease Readiness Action Group to help move Canada's rare disease agenda from identifying priorities to assessing what actually works for patients—and what needs to change.
The Action Group will bring together approximately 12–15 patients/caregivers, patient organization leaders, clinicians, researchers, health-system leaders, and data/measurement experts for a focused, time-limited mandate from September 2026 to April 2027.
What will the Action Group do?
Building on CORD's 2026 Rare Disease Readiness Survey and Summer Webinar Series, members will help CORD:
- test rare disease readiness through real patient journeys and sentinel disease cases;
- identify where pathways work well, where patients encounter barriers, and what enables those barriers to be overcome;
- distinguish disease-specific challenges from recurring system-level gaps;
- refine a practical Rare Disease Readiness Assessment for use at disease, institutional and provincial levels;
- identify transferable best practices rather than create provincial rankings or scorecards; and
- help shape recommendations for Phase 2 of Canada's Rare Disease Drug Strategy and the broader rare disease agenda.
Fall 2026 case-based Readiness Labs will examine several different models, including rare blood disorders, early identification and lifelong care, and readiness for new and evolving treatment options.
Time commitment
The initial mandate will run from September 2026 through April 2027.
Members should anticipate approximately:
- 5–6 virtual Action Group meetings, generally 60–90 minutes;
- modest preparation and document review between meetings; and
- optional participation in focused disease, pathway or measurement discussions relevant to their expertise.
We estimate the core commitment at approximately 10–15 hours in total over the seven-month period.
Members are not being asked to conduct province-by-province data extraction or undertake extensive research on behalf of CORD.
Who are we looking for?
We welcome interest from people bringing one or more of the following perspectives:
- lived experience as a patient or caregiver;
- rare disease patient/community leadership;
- pediatric or adult clinical care;
- genetics/genomics and diagnosis;
- multidisciplinary or specialized rare disease care;
- provincial or health-system implementation;
- professional education and knowledge translation;
- registries, real-world evidence, PROMs/PREMs or health data;
- health policy, access and implementation science.
We also want the Action Group to reflect different diseases, ages, regions and health-system experiences.
Interested?
Please send us your filled out Expression of Interest form by Sep 15, 2026 to info@raredisorders.ca
You do not need to submit a CV unless you wish to do so.
CORD will select a balanced multidisciplinary group rather than membership solely on a first-come basis.
Our goal is practical: identify what a ready rare disease system should deliver, learn from patient pathways and existing best practices, and determine what Canada needs to build next.
We welcome your interest.