Table of Contents
Organizational Structure of IRDiRC
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.
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. Among these representatives, a Chair and Vice Chair of the Consortium Assembly are elected for a period of 3 years that can be renewed once.
The Operating Committee consists of the Chair and the Vice Chair of the Consortium Assembly, the 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.
IRDiRC has three Constituent Committees:
- Companies Constituent Committee (CCC)
- Funders Constituent Committee (FCC)
- Patient Advocates Constituent Committee (PACC)
Each Constituent Committee is composed of Consortium Assembly members who are identified as part of that constituency. The Constituent Committees act as coordinating bodies of each constituent space, inform the Consortium Assembly of scientific and programmatic needs following identification of common roadblocks, gaps, and priorities, and execute activities in that space that will bring IRDiRC closer to its goals. The Chair and Vice Chair of each Constituent Committee are elected for a period of 3 years that can be renewed once.
IRDiRC has three Scientific Committees:
- Diagnostics Scientific Committee (DSC)
- Interdisciplinary Scientific Committee (ISC)
- Therapies Scientific Committee (TSC)
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. Chairs, Vice Chairs, and members of the Scientific Committees are elected for a period of 3 years that can be renewed once.
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.
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.
Office of the IRDiRC Chair
In addition to the Scientific Secretariat, the Office of the Chair supports IRDiRC actions on defined strategic projects and on the global organization of the Consortium activities.