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
Patient Advocacy and Communication Lead Rare Disease Europe, ITALFARMACO, France
Christopher McMasterChair
Funders Constituent Committee
Scientific Director, Canadian Institutes for Health Research (CIHR), Canada
Stefano BenvenutiVice Chair
Funders Constituent Committee
Head of Public Affairs, Telethon Foundation, Italy
Vinciane PirardChair
Companies Constituent Committee
Lead Scientific Advocacy and Insights - Global Medical Affairs Rare Diseases
Adriana Huertas-Vazquez Vice Chair
Companies Constituent Committee
Senior Director, Global Medical Affairs
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,
MGB/NHGRI, UDP/NIH, USA
Clara van KarnebeekVice Chair
Diagnostics Scientific Committee
Professor of Pediatrics & Biochemical Genetics, Emma Center for Personalized Medicine, 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
Director, Regulatory Policy and Early Access, The Association of the British Pharmaceutical Industry (ABPI), UK
Anneliene JonkerVice Chair
Therapies Scientific Committee
Assistant Professor, Rare Diseases Therapeutic Innovation, University of Twente & Scientific Director, Duchenne Parent Project, 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