Governance

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

Shirlene Badger

Vice Chair | CCC

Global Patient Advocacy Lead, illumina, UK

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