Our History

The Canadian Rare Disease Network (CRDN) did not begin as a single organization’s project. It emerged from the collective efforts of patient organizations, clinicians, researchers, families, advocates, and system partners who recognized the need for stronger national coordination in rare disease care and research.

Momentum grew in 2023, following a major federal commitment through Canada’s National Strategy for Drugs for Rare Diseases, and through conversations led by the rare disease community about how Canada could better connect expertise, infrastructure, and action.

June 2023

A Vision Takes Shape

At the Canadian Organization for Rare Disorders (CORD) conference in Ottawa, a smaller roundtable brought together healthcare professionals, researchers, patient advocates, and rare disease experts to explore the idea of a national rare disease network. This conversation helped shape the early vision for CRDN. This vision was then enabled by the University of Calgary’s One Child Every Child initiative.

October 2023

Building the Leadership

CRDN’s Steering Committee began to take shape as a “coalition of the willing,” bringing together leaders from healthcare, research institutions, patient advocacy organizations, and rare disease communities like the Canadian Organization for Rare Disorders (CORD) and Regroupement Québécois des Maladies Orphalines (RQMO). The Steering Committee helped establish an inclusive foundation for CRDN’s mandate and structure.

November 2023

Community Engagement & Identity

CRDN was unofficially announced at the CORD conference, and the rare disease community was invited to help select CRDN’s logo. This process was more than a branding exercise; it helped signal that CRDN would be shaped with and by the community.

February 2024

The Official Launch

CRDN officially launched on Rare Disease Day 2024. The launch marked an important step toward building a coordinated national network focused on improving the lives of people living with rare diseases and their families in Canada.

Ongoing

From Strategy to Impact

Since its launch, CRDN has continued to grow through national coordination, strategic planning, community engagement, publications, working groups, resources, and patient-facing initiatives.