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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What was your “moment that mattered”?
Jun 23, 2026 / News
We're inviting patients, caregivers, family members, and advocates to share one key moment from their experience.
Share your story and help improve diagnosis, care, and support for others.
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