The Operating Committee consists of the Chair and Vice Chair of the Consortium Assembly, the Chairs or Vice 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.
| Name | Function within IRDiRC | Title and Organization | |
|---|---|---|---|
| Lucia Monaco |  | Chair Consortium Assembly | Head, Research Impact and Strategic Analysis, Fondazione Telethon, Italy |
| David Pearce |  | Vice Chair Consortium Assembly | President of Research, Director of Sanford Children's Health Research Center, Professor of Pediatrics, USA |
| Adam Hartman |  | Chair Funders Constituent Committee | Program Director, NIH / National Institute of Neurological Disorders and Stroke (NINDS), USA |
| Catherine Nguyan |  | Vice Chair Funders Constituent Committee | Director of the Thematic Institute of the Genetics, Genomics and Bioinformatics at INSERM |
| Katherine Beaverson |  | Chair Companies Constituent Committee | Patient Advocacy Director, Rare Disease Research Unit at Pfizer, USA |
| Samantha Parker |  | Vice Chair Companies Constituent Committee | Chief Patient Access Officer, InnoSkel, France |
| Durhane Wong-Rieger |  | Chair Patient Advocates Constituent Committee | Chair of the RDI Council |
| Samuel Agyei Wiafe |  | Vice Chair Patient Advocates Constituent Committee | Founder/Executive Director |
| Gareth Baynam |  | Chair Diagnostics Scientific Committee | Adjunct Policy Advisor on Clinical Genomics at the WA Department of Health |
| Biruté Tumiene |  | Vice Chair Diagnostics Scientific Committee | Clinical geneticist at the Centre for Medical Genetics and the Coordinator for Competence Centres in Vilnius University Hospital Santaros Klinikos, Lithuania |
| Philip John Brooks |  | Chair Interdisciplinary Scientific Committee | Program Director, Office of Rare Diseases Research at the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), USA |
| Marc Dooms |  | Vice Chair Interdisciplinary Scientific Committee | Center for Clinical Pharmacology, UZ Leuven, Belgium |
| Daniel O'Connor |  | Chair Therapies Scientific Committee | Expert Medical Assessor, Medicines and Healthcare products Regulatory Agency, The United Kingdom |
| Anneliene Jonker |  | Vice Chair Therapies Scientific Committee | Funding Officer, TechMed Centre, University of Twente Enschede, The Netherlands |