Governance and Operating Mode
Operating Committee
The IRDiRC Operating Committee (OpComm), composed of the chairs of all constituent and scientific committees, sets IRDiRC strategic priorities, key objectives, and policy positions, which are validated through the Consortium Assembly to ensure an equilibrated governance and public policy alignment. Task Forces and Working Groups are formed annually for a period of maximum 18 months to work on specific projects focused on international emerging research topics.
IRDiRC’s mission towards creating a strong collaborative environment is accomplished by bringing together the expertise of multi-stakeholders with the ultimate goal of advancing research in RD field, by proposing innovative approaches.
David Pearce
Chair
Consortium Assembly
Professor, Department of Pediatrics at Sanford School of Medicine at University of South Dakota, USA
Samantha Parker
Vice Chair
Consortium Assembly
Patient Advocacy and Communication Lead Rare Disease Europe, ITALFARMACO, France
Christopher McMaster
Chair
FCC
Scientific Director, Canadian Institutes for Health Research (CIHR), Canada
Stefano Benvenuti
Vice Chair
FCC
Head of Public Affairs, Telethon Foundation, Italy
Vinciane Pirard
Chair
CCC
Lead Scientific Advocacy and Insights – Global Medical Affairs Rare Diseases at SANOFI, Belgium
Adriana Huertas-Vazquez
Vice Chair
CCC
Senior Director, Global Medical Affairs at Illumina, USA
Kelly du Plessis
Chair
PACC
Member, Rare Diseases International, South Africa
Tammi Shipowick
Vice Chair
PACC
Program Director at Global Skin, Canada
Sally Ann Lynch
Chair
DSC
Consultant Clinical Geneticist, Children’s Health Ireland, Ireland
Saumya Shekhar Jamuar
Vice Chair
DSC
Medical Director, KK Women’s and Children’s Hospital, Singapore
Gareth Baynam
Chair
ISC
Medical Director at Rare Care Centre, Perth Children’s Hospital, Australia
Marc Dooms
Vice Chair
ISC
Senior Pharmacist at University Hospitals Leuven, Belgium
Daniel O'Connor
Chair
TSC
Director, Regulatory Policy and Early Access, The Association of the British Pharmaceutical Industry (ABPI), UK
Anneliene Jonker
Vice Chair
TSC
Assistant Professor, Rare Diseases Therapeutic Innovation, University of Twente & Scientific Director, Duchenne Parent Project, The Netherlands
Violeta Stoyanova-Beninska
Chair
RCS
Senior Scientific Specialist at European Medicines Agency, Netherlands
Oxana Iliach
Vice Chair
RSC
Senior Director Regulatory Strategy, Certara, Canada