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 | |
---|---|---|---|
![]() | David Pearce | Chair Consortium Assembly | President of Innovation, Research & World Clinic Sanford Health, USA |
![]() | Samantha Parker | Vice Chair Consortium Assembly | Chief Patient Access Officer, Innoskel, France |
![]() | Adam Hartman | Chair Funders Constituent Committee | Program Director, National Institute of Neurological Disorders and Stroke (NINDS) part of U.S. National Institutes of Health (NIH), USA |
![]() | Catherine Nguyen | Vice Chair Funders Constituent Committee | Director of the Thematic Institute of the Genetics, Genomics and Bioinformatics at INSERM, France |
![]() | Katherine Beaverson | Chair Companies Constituent Committee | Executive Director, Head of Patient Advocacy and External Engagement, Rare Disease Research Unit at Pfizer, USA |
![]() | Durhane Wong-Rieger | Chair Patient Advocates Constituent Committee | Chair of the RDI Council, Global |
![]() | Samuel Agyei Wiafe | Vice Chair Patient Advocates Constituent Committee | Founder/Executive Director Rare Disease Ghana Initiative (RDGI), Ghana |
![]() | David Adams | Chair Diagnostics Scientific Committee | Deputy Director of Clinical Genomics, Office of the Clinical Director/ NHGRI, MGB/NHGRI, UDP/NIH, USA |
![]() | Clara van Karnebeek | Vice Chair Diagnostics Scientific Committee | Principal Investigator and Medical Director, Amsterdam UMC, The Netherlands |
![]() | Gareth Baynam | Chair Interdisciplinary Scientific Committee | Medical Director at Rare Care Centre, Perth Children’s Hospital, Australia |
![]() | Marc Dooms | Vice Chair Interdisciplinary Scientific Committee | Center for Clinical Pharmacology, University Hospitals Leuven, Belgium |
![]() | Daniel O'Connor | Chair Therapies Scientific Committee | Deputy Director, Innovation Accelerator and Regulatory Science, Medicines and Healthcare products Regulatory Agency (MHRA), UK |
![]() | Anneliene Jonker | Vice Chair Therapies Scientific Committee | Program Lead Personalised Medicine, University of Twente, The Netherlands |
![]() | Anne Pariser | Chair Regulatory Scientific Committee | VP, Medical and Regulatory Affairs at Alltrna, USA |
![]() | Violeta Stoyanova-Beninska | Vice Chair Regulatory Scientific Committee | Chair of Committee for Orphan Medicinal Products, EMA, The Netherlands |