Canada’s rare disease strategy is working. Now governments must build Phase 2.
Canada’s National Strategy for Drugs for Rare Diseases has begun to deliver meaningful progress. Patients are gaining access to treatments, while governments are strengthening screening, diagnosis, specialist services and coordinated care.
But the current federal-provincial-territorial agreements expire in March 2027. Without renewed funding, that progress is at risk.
In an open letter to Canada’s federal, provincial and territorial health ministers, the Canadian Organization for Rare Disorders is calling on governments to:
- Jointly support the continuation of the federal commitment of $500 million annually for rare diseases beyond March 2027.
- Establish predictable, multi-year funding arrangements.
- Build a more comprehensive Phase 2 that connects access to medicines with earlier diagnosis, coordinated care, patient navigation, clinical data and outcome monitoring.
- Strengthen collaboration among governments, patients, clinicians, researchers and other partners.
Canada has built a strong foundation. The next step is to sustain treatment access while preparing health systems for the therapies, diagnostics and care needs ahead.
Now is the time to secure Phase 2 and turn early progress into lasting change for patients and families.
Read the open letter HERE