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Get Involved

There are many ways to get involved with RARE.Qc...


Become a member

Are you a researcher, student, or patient partner and wish to contribute to our research network? Contributions could include:

  • Providing advice or feedback for decision making by research teams.
  • Collaborating with group members towards a specific network-related goal or initiative.
  • Participating in an informal panel or facilitation of a small group.


Join one of our Governance Committees

Our RARE.Qc governance will be led by multiple committees, namely the

The Scientific Committee is responsible for contributing to the planning and implementation of the strategic action plan. The Scientific Committee is also responsible for:

  • Ensuring compliance with the network’s scientific orientations and priorities
  • Encourage the creation of scientific activities and promote exchanges and collaboration within the network
  • Participate in the scientific evaluation and monitoring of structuring initiatives and shared resources

The EDI committee is responsible to ensure that EDI factors are implemented, measured, monitored and communicated in a manner that is inclusive, relevant, adapted and representative of the reality of its members and the rare disease research context in Quebec. FRQS has published a strategy to strengthen the integration of these principles.

The student committee’s mandate is to represent the student members of the Network and to participate in its mission of training, dissemination and knowledge mobilization.

The Knowledge Mobilization Committee (KMC) mandate is to advise on the development, implementation and progress of the knowledge mobilization activities within the network. The KMC will:

  • Establish, and update as necessary, a KM framework for the network
  • Advise on the KM activities, such that the research evidence generated by the network is appropriately mobilized into policy, practice and/or further research
  • Advise on KM activities in collaboration with Network committees and key stakeholders that will advance the goals of the Network
  • Advise the Management Committee on evaluation metrics for the Network
  • Advise on the training of students in KM in the context of rare diseases

To apply to join one or more of our committees, please submit your biosketch CV (maximum 5 pages) and 1 page letter of intention.


Attend an event

Participate in our upcoming RARE.Qc events. Planning an event that could interest our RARE.Qc members? Contact us today and it could be featured in our monthly newsletter!