Organizational Structure of IRDiRC


IRDiRC is governed through a Consortium Assembly, an Operating Committee, three Constituent Committees and four Scientific Committees, aided by ad hoc Task Forces and Working Groups. 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 organization (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 four Scientific Committees. Among the organization representatives, a Chair and a Vice Chair of the Consortium Assembly are elected for a period of 3 years that can be renewed once.

Operating Committee

The Operating Committee consists of the Chair and the Vice Chair of the Consortium Assembly, the Chairs and Vice Chairs of the Constituent and the 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:

  • Funders Constituent Committee (FCC)
  • Companies Constituent Committee (CCC)
  • Patient Advocates Constituent Committee (PACC)

Each Constituent Committee is composed of IRDiRC members who are identified as part of that constituency (e.g., industry-based IRDiRC members participate in the Companies Constituent Committee). The Constituent Committees act as coordinating bodies of each respective constituent space, inform the Consortium Assembly of scientific and programmatic needs following identification of common roadblocks, gaps and priorities, and execute activities specific to their constituency space that will bring IRDiRC closer to its goals. The Chair and the Vice Chair of each Constituent Committee are elected for a period of 3 years that can be renewed once.

Scientific Committees

IRDiRC has four Scientific Committees:

  • Diagnostics Scientific Committee (DSC)
  • Interdisciplinary Scientific Committee (ISC)
  • Therapies Scientific Committee (TSC)
  • Regulatory Scientific Committee (RSC)

Each Scientific Committee is composed of approximately 15 members with balanced expertise and representation from academia, patient organizations, diagnostics, pharmaceutical industry, and regulatory bodies. The Scientific Committees identify and propose actionable projects to advance rare disease research, report on Task Force and Working Group activities and progress made from a scientific point of view, advise the Consortium Assembly on research priorities and funding gaps, and execute activities in their scientific areas that will bring IRDiRC closer to its goals. Members of the Scientific Committees are nominated for their individual expertise and approved by the Consortium Assembly. The duration of the initial mandate of the Scientific Committees members is 3 years, with the possibility of one renewal. The Chair and the Vice Chair of each Scientific Committee are elected for a period of 3 years that can be renewed once.

Task Forces and Working Groups

The Task Forces and Working Groups 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 and Working Group 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 and Working Groups 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 and Working Groups may operate, on a time-limited mandate, either solely as IRDiRC initiatives or jointly with other external organisations that wish to collaborate and address similar issues.

Scientific Secretariat

The Scientific Secretariat provides relevant day-to-day actions aimed at assuring the correct organization and management of the IRDiRC Consortium and its members.  In details, the Scientific Secretariat (i) supports the work of IRDiRC Committees, Task Forces, and Working Groups, (ii) organizes and coordinates meetings, teleconferences, and events, (iii) develops and provides all required documents, (iv) facilitates the coordination and collaboration intra-consortium and with relevant external organizations and initiatives, (v) provides secretariat support and (vi) engages in communication and dissemination activities.   

Office of the IRDiRC Chair

In addition to the Scientific Secretariat, the Office of the Chair supports IRDiRC actions on defined strategic projects as well as global Consortium activities, reinforces the activities of the Scientific Secretariat, assists the organization of communication channels between the Chair and Consortium members, and provides activity reports to the Chair.

Governance Documents