Governance Structure

IRDiRC is governed by a Consortium Assembly, three Scientific Committees and, previously, a number of Working Groups now replaced by several Task Forces. The mandate and composition of these bodies are described below.

IRDiRC Governance Structure


Consortium Assembly

IRDiRC is run by an Consortium Assembly composed of one representative per funding body, each group of funders (for the small funders), representatives of patient umbrella organizations and the Chair of each of the three Scientific Committees. Reports of Consortium Assembly meetings are accessible here.

Scientific Committees

IRDiRC is composed of three Scientific Committees:

  • Diagnostics Committee that advises on research related to the diagnoses of rare disease, including sequencing and characterization of these diseases.
  • Interdisciplinary Committee that provides expertise on cross-cutting aspects of rare diseases research, including issues related to ontologies, natural history, bio-banking and registries.
  • Therapies Committee that gives guidance for pre-clinical and clinical research, aiming to deliver on the goal to develop 200 new therapies for rare diseases by the year 2020.

Each Scientific Committee is composed of approximately 15 members with balanced expertise and representation from academia, patient organizations, diagnostics, pharmaceutical industry and regulatory bodies. Members advise the Consortium Assembly on research priorities and progress made from a scientific point of view. Links to meeting reports of the Scientific Committees can be found here.

Working Groups

The Working Groups were composed of representatives from funded projects that contributed to IRDiRC objectives within the scientific domain of the working group. They cooperated to ensure synergies between all research projects, by exchanging results, expertise, experiences and information.
The Working Groups have completed their mandate.
Information on the work of former Working Groups can be found here.

Task Forces

Ad hoc Task Forces are constituted to push forward policy change in specific research areas selected as prioritized topics by the Consortium Assembly. Task Forces will participate in organizing and contributing to topic-specific workshops in order to push forward the implementation of workshop outcomes.

Scientific Secretariat

The task of the Scientific Secretariat is to provide organizational support to the implementation of the IRDiRC in close collaboration with the different committees and all the stakeholders.

IRDiRC governance structure document can be consulted here.
IRDiRC’s former governance structure document can be consulted here.

SUPPORT-IRDiRC website is accessible here.