Strengthening Global Bridges: Canada’s Leadership in Rare Disease Research at the ERDERA Sofia Meeting

RareKids-CAN Nominated Principal Investigator, Thierry Lacaze, presents at the March 2026 ERDERA Meeting.

The Canadian National Mirror Group (NMG) continues to play an important role in connecting Canada’s rare disease ecosystem with global initiatives, including ERDERA. Led by RareKids-CAN in partnership with the Canadian Rare Disease Network (CRDN), the NMG brings together stakeholders across research, policy, funding, and patient advocacy to strengthen alignment, collaboration, and information exchange across the country.

Through this work, the NMG helps bridge Canada’s rare disease ecosystem, supporting greater coordination and ensuring Canadian expertise is well-positioned within the global community. As of February 2026, twenty National Mirror Groups have launched and are operational. We are particularly excited to be deepening our engagement with ERDERA. RareKids-CAN Nominated Principal Investigator, Thierry Lacaze, attended the March 2026 ERDERA meeting in Sofia alongside Anne-Cécile Desfaits from the Canadian Institutes of Health Research (CIHR). Together they represented Canada and strengthened connections with international partners.

ERDERA’s Work Packages are advancing critical areas such as research coordination, data and infrastructure, clinical trial readiness, and capacity building across Europe and beyond. There is tremendous momentum across ERDERA’s Work Packages, and we are eager to learn from the important work underway while exploring opportunities to connect Canadian researchers and our sub-platforms more directly with these initiatives.

We also had the opportunity to connect with colleagues from other Commonwealth countries to explore potential areas of collaboration, including rare disease clinical trials and primary care for rare disease patients.

By strengthening these linkages, we aim to enhance collaboration, share knowledge, and contribute meaningfully to global efforts advancing rare disease research and care.