Operating Committee

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.

 NameFunction within IRDiRCTitle and Organization
David PearceChair
Consortium Assembly
President of Innovation, Research & World Clinic Sanford Health, USA
Samantha ParkerVice Chair
Consortium Assembly
Chief Patient Access Officer, Innoskel, France
Adam HartmanChair
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 BeaversonChair
Companies Constituent Committee
Executive Director, Head of Patient Advocacy and External Engagement, Rare Disease Research Unit at Pfizer, USA
Durhane Wong-RiegerChair
Patient Advocates Constituent Committee
Chair of the RDI Council, Global
Samuel Agyei WiafeVice Chair
Patient Advocates Constituent Committee
Founder/Executive Director Rare Disease Ghana Initiative (RDGI), Ghana
David AdamsChair
Diagnostics Scientific Committee
Deputy Director of Clinical Genomics, Office of the Clinical Director/ NHGRI,
Clara van KarnebeekVice Chair
Diagnostics Scientific Committee
Principal Investigator and Medical Director, Amsterdam UMC, The Netherlands
Gareth BaynamChair
Interdisciplinary Scientific Committee
Medical Director at Rare Care Centre, Perth Children’s Hospital, Australia
Marc DoomsVice 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 JonkerVice Chair
Therapies Scientific Committee
Program Lead Personalised Medicine, University of Twente, The Netherlands
Anne PariserChair
Regulatory Scientific Committee
VP, Medical and Regulatory Affairs at Alltrna, USA
Violeta Stoyanova-BeninskaVice Chair
Regulatory Scientific Committee
Chair of Committee for Orphan Medicinal Products, EMA, The Netherlands