Task Forces & Working Groups


The IRDiRC Task Forces are created to tackle specific topics within rare diseases research proposed by the Constituent and/or Scientific Committees and selected as prioritized actions by the Consortium Assembly and the Operating Committee.
Each Task Force reviews current barriers to efficient and effective rare disease research, and proposes solutions through policy recommendations and/or technical applications including platforms, tools, standards and guidelines.
Members of the Task Forces are nominated based on their expertise in the selected area and include key players of diverse backgrounds to ensure different perspectives are taken into consideration to drive innovation and new approaches.
The Task Forces may operate, on a time-limited mandate, either solely as IRDiRC initiatives or jointly with partner groups that wish to collaborate and address similar issues.

Objectives of the Task Forces

  • Topics specific to rare diseases
  • High leverage projects with strong translational potential and international scope
  • Actions for international scope and relevance
  • Projects that have not been covered by international initiatives
  • Well targeted, actionable projects, with potential to produce results before 2027
  • Clear objectives and timelines to improve participation and member motivation
  • Coordination with other organizations to identify gaps and needs
  • Alignment and harmonization of projects with other international initiatives