Canadian Rare Disease Coordination Meeting: Report Summary

Co-organized by CIHR Institute of Genetics and Genome Canada October 4, 2023, Montréal QC

Prepared by Kateryna Kratzer, Cheryl Bailey, Étienne Richer, and Sapna Mahajan.

The Canadian Rare Disease Coordination (CRDC) Meeting was held to bring together diverse groups and initiatives involved in rare disease (RD) research and patient care. The objectives were to showcase current Canadian RD projects and links with international collaborators, identify key issues and barriers to be addressed, and to discuss next steps to achieve collective goals.

Forty-one participants attended the half-day meeting. By bringing together patients, researchers, and representatives from government and not-for-profit funding agencies, the meeting enabled a shared understanding of the RD clinical and biomedical research landscape in Canada.

The first half of the CRDC Meeting included presentations by experts on patient partnerships, members of international RD partnerships and networks, and leads of RD research projects. The second half of the meeting was a guided roundtable discussion.

Key points from the meeting included:

  • Current efforts to include patient perspectives in research and healthcare are an excellent start. Progress has also been made in improving equity, diversity, and inclusion (EDI) and sex- and gender-based analysis in research. Institutions need to reduce systemic barriers to more equitable research.
  • A Canadian National Mirror Group (NMG) is being established to maintain coordination between Canadian initiatives and the European Joint Programme on RDs (EJP RD).
  • Canadian RD efforts can benefit from better coordination. An overarching framework bringing initiatives together, promoting collaboration, and streamlining research would contribute to achieving this goal.
    • A coordinating network will require support and resources and must align with global efforts. Canada can be a leader through the International RD Research Consortium (IRDiRC).
    • CIHR Institute of Genetics and Genome Canada committed to continuously improve coordination and alignment.
    • Ongoing meetings with input from additional stakeholders, mapping existing RD research projects, identifying remaining gaps to be addressed, and determining concrete actions are crucial for coordination and will be held on a regular basis.
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