Governance and Operating Committee
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
Stefano Benvenuti
Chair | FCC
Head of Public Affairs, Telethon Foundation, Italy
Naveed Aziz
Vice Chair | FCC
Vice President of Research and Innovation, Genome Canada, Canada
Vinciane Pirard
Chair | CCC
Lead Scientific Advocacy and Insights – Global Medical Affairs Rare Diseases at SANOFI, Belgium
To Be Designated
Vice Chair | CCC
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
Helen Malherbe
Vice Chair | ISC
Associate Professor, Centre for Human Metabolomics, North-West University, South Africa
Shekhar Natarajan
Chair | TSC
Vice President, Head of EU and International Regulatory Affairs, Dyne Therapeutics, USA
Diana Kwast
Vice Chair | TSC
Executive Director, (Un)limited Forward! (patient-led, non-profit foundation for rare diseases & MLTC), EUPATI and EUCAPA Fellow, and PhD Candidate, University Medical Center Groningen (UMCG), The Netherlands
Violeta Stoyanova-Beninska
Chair | RSC
Senior Scientific Specialist at European Medicines Agency, Netherlands
