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
Biruté TumieneVice 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
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