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Figure 1. Organizational structure of IRDiRC. The Consortium assembly comprises members of all participating organizations and
oversees the activities of IRDiRC. The Constituent and Scientific Committees act in an advisory role to identify key issues that can be
addressed through Task Forces and Working Groups, reporting to an Operating Committee that works alongside the Scientific
Secretariat to communicate recommendations and progress to the Consortium Assembly. Organizational structure of IRDiRC. The
Consortium assembly comprises members of all participating organizations and oversees the activities of IRDiRC. The Constituent and
Scientific Committees act in an advisory role to identify key issues that can be addressed through Task Forces and Working Groups,
reporting to an Operating Committee that works alongside the Scientific Secretariat to communicate recommendations and progress to
the Consortium Assembly. IRDiRC: International Rare Disease Research Consortium.

of Rare Disease Research and Development and the PLUTO PROJECT-Disregarded Rare Diseases seeks to
understand some of the barriers that may limit research and development efforts. Recognizing that most RD
patients present first to their primary care provider and will continue to receive care from them, the Primary
Care TF seeks to identify challenges and opportunities for research. To facilitate clinical research, the
Machine-Readable Consent and Use TF aims to develop tools and standards to facilitate research with
human subjects to enable collaborative efforts. Developing new technologies for both diagnosis and
treatment are essential aspects of the fight against RDs, which are addressed by the Integrating New
Technologies for the Diagnosis of Rare Disease TF, which will develop a framework for integrating new -
omics and artificial intelligence technologies to improve diagnostics, and the MedTech for Rare Disease WG
will identify opportunities to support medical device development for RDs. Finally, to address key
challenges in access to treatment, IRDiRC has established the Enabling and Enhancing Telehealth for Rare
Diseases Across the Globe TF that will identify barriers and opportunities to enhance access to RD experts
through telehealth, while the IRDiRC-RDI Global Access WG will focus on access for patients in low- to
middle-income countries, ensuring that “no one is left behind”. A full list of completed and ongoing TFs/
WGs can be found here https://irdirc.org/activities/task-forces/.

Funding
IRDiRC is primarily a volunteer organization with members of the consortium assembly, constituent
committees, scientific committees, and task forces/working groups donating their time towards consortium
activities. The EU, through the European Joint Program on Rare Diseases (EJPRD), provides funding for
project managers, an office manager, a communications manager, and a project coordinator, with their
efforts split between IRDiRC and other EJPRD activities. Additional funding is available to support travel
and meeting/conference resources for PACC members and the SC chairs/vice-chairs at Consortium
Assembly meetings, as well as those participating in in-person TF workshops (WGs do not meet in person).

Members of IRDiRC are not charged a membership fee, but there is a requirement to demonstrate financial
investment of US $10 million over 5 years in rare disease research, which can be internal or external. This
requirement applies to both the funders and company members but is waived for patient advocate groups.
Smaller funding bodies that cannot meet the threshold on their own can form a funders group that meets
the threshold, but may only nominate one representative from the group to serve on the CA. In general,