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Our History

The Canadian Rare Disease Network emerged from years of dedicated advocacy, with significant leadership from the Canadian Organization for Rare Disorders (CORD). This collective journey gained momentum through a pivotal federal commitment of $1.5 billion as part of the National Strategy for Drugs for Rare Diseases in March 2023. These milestones created a crucial window of opportunity.

June 2023
A Vision Takes Shape

The vision for the Canadian Rare Disease Network was shaped during a smaller roundtable at the Canadian Organization for Rare Disorders (CORD) conference in Ottawa in June 2023. This intimate gathering of healthcare professionals, patients, advocates, researchers, and experts laid the foundational ideas that would soon develop into the Canadian Rare Disease Network. It was here that the collective vision began to take form, setting the stage for a network built on collaboration and shared purpose.

October 2023
Building the Leadership

The subsequent formation of the Steering Committee was a critical step in establishing an inclusive leadership foundation. Comprised of representatives from diverse healthcare and research institutions, alongside patient advocacy groups like the Canadian Organization for Rare Disorders (CORD) and Regroupement Québécois des Maladies Orphalines (RQMO), the Steering Committee ensured that our mandate and structure would foster a collaborative approach to rare disease research, diagnosis, treatment, care, and support.

November 2023
Community Engagement & Identity

November 2023 marked a pivotal moment when the Canadian Rare Disease Network was unofficially announced at the Canadian Organization for Rare Disorders (CORD) conference, and public engagement was sought for selecting our logo. This process was more than just choosing a visual identity; it became a symbol of unity and a testament to the active involvement of the rare disease community.

February 2024
The Official Launch

Officially launched on Rare Disease Day, February 29, 2024, our story stands as a beacon of how collaboration and inclusivity can shape a network committed to making a meaningful impact on the lives of rare disease patients and their families in Canada.

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