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 |
| Daria Julkowska |  | Chair Funders Constituent Committee, Coordinator Sci Sec | Coordinator, European Joint Programme on Rare Diseases (EJP RD), Europe |
| Adam Hartman |  | Vice Chair Funders Constituent Committee | Program Director, NIH / National Institute of Neurological Disorders and Stroke (NINDS), USA |
| Mathew Pletcher |  | Chair Companies Constituent Committee | Head of Rare Disease Discovery Roche, Switzelrand |
| Madhu Natarajan |  | Vice Chair Companies Constituent Committee | Research Therapeutic Area Head, Ophtalmics and Complement Biology |
| Durhane Wong-Rieger |  | Chair Patient Advocates Constitutent Committee | President & CEO, Canadian Organization for Rare Disorders (CORD) |
| Yukiko Nishimura |  | Vice Chair Patient Advocates Constitutent Committee | President, Advocacy Service for Rare and Intractable Diseases' stakeholders (ASrid), Japan |
| Gareth Baynam |  | Chair Diagnostics Scientific Committee | Adjunct Policy Advisor on Clinical Genomics at the WA Department of Health |
| Sarah Bowdin | Vice Chair Diagnostics Scientific Committee | Consultant Clinical Geneticist, Addenbrooke's Hospital, Cambridge, UK | |
| Diego Ardigò |  | Chair Therapies Scientific Committee | Project Leader, Advanced Therapy Medicinal Products (ATMP) and biologics, Chiesi Farmaceutici S.p.A., Italy |
| Virginie Hivert |  | Vice Chair Therapies Scientific Committee | Therapeutic Development Director, EURORDIS-Rare Disease Europe, France |
| Stephen Groft |  | Chair Interdisciplinary Scientific Committee | Senior Advisor, NIH / National Center for Advancing Translational Sciences (NCATS), USA |
| Dixie Baker |  | Vice Chair Interdisciplinary Scientific Committee | Senior Partner at Martin, Blanck and Associates, Alexandria, USA |