IRDiRC Governance

IRDiRC Organizational Structure

Organigram of IRDiRC, as of 2017

IRDiRC is governed through a Consortium Assembly, an Operating Committee, three Constituent Committees and three Scientific Committees, aided by ad hoc Task Forces. The Scientific Secretariat provides organizational and communications support. The composition of these bodies are described below.


Consortium Assembly

The IRDiRC Consortium Assembly is composed of one representative per member funding body, group of funders (for small funders), company, umbrella organization of patient advocacy groups, and the Chair and Vice Chair of each of the three Scientific Committees.

Reports and/or executive summaries of Consortium Assembly meetings are accessible here.

For information on becoming an IRDiRC member thus represented in the Consortium Assembly and Constituent Committees (see section below), please consult the Become a Member page.


Operating Committee

The Operating Committee consists of the Chair and Vice Chair of the Consortium Assembly, the Chairs of the Constituent and Scientific Committees, and the Scientific Secretariat. The Operating Committee meets regularly to prepare and advance IRDiRC activities, process information, and enable more effective management of the consortium as a whole.


Constituent Committees

IRDiRC has three Constituent Committees, one each for the major areas of representation – Funders, Companies, and Patient Advocates. Each Constituent Committee is composed of Consortium Assembly members who are identified as part of that constituency. The Constituent Committees act as coordinating body of each constituent space and inform the Consortium Assembly of scientific and programmatic needs following identification of common roadblocks, gaps and priorities.


Scientific Committees

IRDiRC has three Scientific Committees:

  • Diagnostics Scientific Committee that advises on research related to the diagnoses of rare disease, including gene discovery and characterization of these diseases.
  • Interdisciplinary Scientific Committee that provides expertise on cross-cutting aspects of rare diseases research, including ontologies, natural history, bio-banking and registries.
  • Therapies Scientific Committee that gives guidance for pre-clinical and clinical research, in order to spur the development of new rare disease therapies.

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.

Meeting reports of the Scientific Committees 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. Members of Task Forces are nominated based on their specific expertise in the selected fields and include key players of diverse backgrounds (e.g. academia, industry, regulatory, advocacy) to ensure different needs are met. Task Forces will organize and contribute to topic-specific workshops, and propose solutions through policy recommendations and/or technical applications.

Prior to the constitution of Task Forces, a number of Working Groups were operational to exchange information and experiences within a set of scientific domains. More information on the work and meeting reports of former Working Groups can be found here.


Scientific Secretariat

The Scientific Secretariat provides organizational and communicational support to IRDiRC and its members, therefore contributes to the development of policies and guidelines aimed at accelerating research on rare diseases, reinforcing international research cooperation, and reaching IRDiRC goals.

The SUPPORT-IRDiRC website is accessible here.


Governance Documents

– Current IRDiRC Governance document: v4-2017
– Former IRDiRC Governance documents: v1-2013, v2-2015, v3-2016