Canadian National Mirror Group

What is the Canadian National Mirror Group?

The Canadian National Mirror Group (NMG) is Canada’s coordination and information exchange mechanism for engagement with the European Rare Disease Research Alliance (ERDERA). Co-led by RareKids-CAN (RKC) and the Canadian Rare Disease Network (CRDN), and hosted by MICYRN, the NMG brings together Canadian stakeholders across research, policy, funding, and patient advocacy to support alignment and collaboration in rare disease research and care.

Through this work, the NMG helps connect Canada’s diverse rare disease ecosystem and ensures Canadian expertise is well-positioned within the global rare disease community.

What is ERDERA?

The European Rare Disease Research Alliance (ERDERA) is a global initiative aimed at accelerating rare disease research and improving outcomes for people living with rare conditions through international collaboration.

Within ERDERA, National Mirror Groups (NMGs) are established in participating countries to coordinate national efforts and ensure alignment with ERDERA’s strategic priorities and work packages. These groups bring together key stakeholders including researchers, clinicians, patients, and policymakers, to support collaboration and knowledge exchange.

In this context, the Canadian NMG serves as a structured, two-way link between Canada’s rare disease community and ERDERA’s broader international activities. It helps ensure that Canadian perspectives inform global efforts, while also connecting Canada to emerging research, policy developments, and capacity-building opportunities.

What is the purpose of the Canadian NMG?

The Canadian NMG serves as a strategic coordination mechanism to support collaboration and alignment across Canada’s rare disease ecosystem.

Specifically, the NMG:

1) Supports national alignment and collaboration

  • Provides a forum for members to share priorities, initiatives, and emerging opportunities

  • Identifies areas for coordination across programs, investments, and infrastructure

  • Supports alignment across national initiatives, including Canada’s National Strategy for Drugs for Rare Diseases

3) Coordinates Canadian engagement in international initiatives

  • Facilitates Canada’s participation in ERDERA and related global efforts (e.g., IRDiRC)

  • Coordinates Canadian input into international activities where appropriate

2) Identifies shared priorities and enabling conditions

  • Discusses emerging challenges and opportunities across the rare disease ecosystem

  • Explores actions to strengthen infrastructure, policy alignment, funding coordination, and data systems

4) Supports information exchange and ecosystem awareness

  • Shares updates on relevant activities, policy developments, and funding opportunities

  • Monitors emerging developments nationally and internationally

Who is involved?

The Canadian NMG is co-led by the CRDN and RKC, with MICYRN serving as the host organization.

This coordinated leadership model reflects the breadth of Canada’s rare disease landscape and enables meaningful engagement across sectors. The NMG includes representatives from research networks, federal agencies, national and provincial funders, and patient advocacy organizations, ensuring that diverse perspectives are represented in both national and international discussions.

What is the scope of this group?

The NMG focuses on issues relevant to advancing rare disease research, innovation, and care in Canada. Key areas of focus include:

  • Diagnostics and genomics

  • Research and clinical trials infrastructure

  • Data and registries

  • Policy and regulatory developments, including activities under Canada’s National Strategy for Drugs for Rare Diseases

  • International collaboration, including ERDERA and other global initiatives

Why does the NMG matter?

Canada’s rare disease landscape is shaped by a large geography, a dispersed population, and a federated healthcare system in which provinces and territories are responsible for healthcare delivery. While this creates a dynamic and innovative ecosystem, it can also result in fragmentation across initiatives and programs.

The NMG plays a critical role in connecting these efforts - improving visibility, strengthening coordination, and enabling Canada to engage more effectively in global rare disease initiatives. Through CRDN’s national coordination mandate and RKC’s clinical and research leadership, the NMG strengthens connections across sectors and enhances Canada’s ability to act as a cohesive partner internationally. The NMG also supports alignment across national efforts such as Canada’s National Strategy for Drugs for Rare Diseases, helping connect stakeholders and initiatives working to improve access, diagnosis, and research.

Additional Details

For more information or to connect with the Canadian National Mirror Group, please contact: Dr. Catherine Strandt at catherine.strandt@micyrn.ca