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 |
Adam Hartman | ![]() | Chair Funders Constituent Committee | Program Director, NIH / National Institute of Neurological Disorders and Stroke (NINDS), USA |
Catherine Nguyan | ![]() | Vice Chair Funders Constituent Committee | Director of the Thematic Institute of the Genetics, Genomics and Bioinformatics at INSERM |
Katherine Beaverson | ![]() | Chair Companies Constituent Committee | Patient Advocacy Director, Rare Disease Research Unit at Pfizer, USA |
Durhane Wong-Rieger | ![]() | Chair Patient Advocates Constitutent Committee | Chair of the RDI Council |
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 |
Philip John Brooks | ![]() | Chair Interdisciplinary Scientific Committee | Program Director, Office of Rare Diseases Research at the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), USA |
Dixie Baker | ![]() | Vice Chair Interdisciplinary Scientific Committee | Senior Partner at Martin, Blanck and Associates, Alexandria, USA |