Open letter: Building Phase 2 of Canada’s rare disease strategy
Oct 13, 2026 / News
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
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Lifileucel Ontario case: why it matters beyond melanoma
Sep 29, 2026 / News
CORD has prepared a short summary of the case and its relevance to rare disease and rare therapeutic populations, including parallels with Yescarta and other advanced therapies.
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CORD Rare Disease Readiness Action Group: Call for Expressions of Interest
Aug 20, 2026 / News
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.
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Renew and expand the National Strategy for Drugs for Rare Diseases
Jul 21, 2026 / News
As Premiers gather for the Council of the Federation meeting, CORD is calling on First Ministers to renew and strengthen Canada’s National Strategy for Drugs for Rare Diseases before current agreements expire in 2027.
The strategy is working: patients are gaining faster access to treatments, and Canada is building the diagnosis, genomics, data and care capacity needed for the future.
Now is the time to secure Phase 2 — and keep momentum going.
Read the full letter.
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Rare Disease Readiness Survey
Jul 14, 2026 / News
CORD is inviting members of the rare disease community in Canada, including patients, caregivers, clinicians, researchers, patient organizations, policy partners, and health-system leaders, to participate in the Rare Disease Readiness Survey.
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