IRDiRC members include:
- Funding organizations (i.e., public and private funding bodies, groups of funders) investing more than 10 million USD over 5 years in rare disease research
- Companies (i.e., Biotech, Pharma, MedTech, etc) investing more than 10 million USD over 5 years in rare disease research
- Umbrella patient advocacy organizations representing broad patients’ interests for all rare diseases in at least one country or larger area
Country | Organization | Representative | Title | |
---|---|---|---|---|
USA | Sanford Research | David Pearce (Chair) | President of Innovation, Research & World Clinic | |
France | ITALFARMACO | Samantha Parker (Vice Chair) | Patient Advocacy and Communication Lead Rare Disease Europe | |
USA | National Institute of Neurological Disorders and Stroke (NINDS) part of U.S. National Institutes of Health (NIH) | Adam Hartman | Program Director | |
USA | Illumina, Inc. | Adriana Huertas-Vazquez | Senior Director, Global Medical Affairs | |
France | National Institute of Health and Medical Research (INSERM) | Catherine Nguyen | Director of the Thematic Institute of the Genetics, Genomics and Bioinformatics | |
USA | Global Genes | Charlene Son Rigby | CEO | |
Canada | Canadian Institutes of Health Research (CIHR) | Christopher McMaster | Professor, Scientific Director | |
France | Foundation for Rare Diseases | Daniel Scherman | Director | |
USA | Nicklaus Children's Hopital | David Seo | Senior Vice President | |
USA | Orphan Disease Center | Deborah Requesens | Director, JumpStart Program Orphan Disease Center, University of Pennsylvania |
|
USA | Pfizer | Denis Keohane | VP Global Global Medical Affairs in Rare Disease | |
Italy | Chiesi Farmaceutici S.p.A. | Diego Ardigò | Head of Global Rare Diseases Research and Development | |
Italy | Istituto Superiore di Sanità (ISS) | Domenica Taruscio | Director | |
Canada | Rare Diseases International (RDI) | Durhane Wong-Rieger | Chair of the RDI Council | |
Botswana | Botswana Organization for Rare Diseases (BORDIS) | Eda Selebatso | Founder & Chairperson | |
Spain | Instituto de Salud Carlos III (ISCIII) | Eva Bermejo-Sánchez | Director | |
USA | National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) part of U.S. National Institutes of Health (NIH) | Faye H. Chen | Program Director, Rare Diseases and Integrated Physiology of Bone Program | |
Denmark | UCB | Gabriella Almberg | Global Head Policy & Public Affairs, Rare Disease Organisation | |
Belgium | European Commission | Irene Norstedt | Director - People Directorate | |
USA | Recursion Pharmaceuticals, Inc | Jeanene Fogli | Head of Patient Advocacy and External Collaboration | |
Canada | Canadian Organization for Rare Disorders | Jida El Hajjar | Board member | |
South Korea | Korea Disease Control and Prevention Agency | Jiwon M. Lee | Director, Division of Rare Disease Management, Bureau of Chronic Disease Management | |
USA | National Institute of Dental and Craniofacial Research (NIDCR) part of U.S. National Institutes of Health (NIH) | Jason Wan | Director, Mineralized Tissue Physiology Program Integrative Biology and Infectious Diseases Branch |
|
Peru | Iberoamerican Alliance for Rare Diseases (ALIBER) | Karla Ruiz de Castilla | Secretary of ALIBER and President of ESPERANTRA | |
USA | Food and Drug Administration, Office of Orphan Products Development (FDA/OOPD) | Katherine Needleman | Director, Orphan Products Grants Program FDA/OOPD | |
South Africa | Rare Diseases South Africa | Kelly du Plessis | CEO & Founder | |
China | Chinese Organization for Rare Disorders (CORD) | Kevin Huang | Founder & President | |
Australia | Western Australian Department of Health | Kristen Nowak | Director, Office of Population Health Genomics; Western Australia Department of Health | |
USA | Congressionally Directed Medical Research Programs (part of USAMRDC) | Kristy Lidie | Deputy Director for Program Management | |
USA | Takeda Pharmaceuticals | Laura Rosen | Head, Neuroscience Translational Medicine | |
USA | Biogen | Lewis Raynor | Director Epidemiology | |
USA | National Human Genome Research Institute (NHGRI) part of U.S. National Institutes of Health (NIH) | Lisa Chadwick | Program Director, Division of Genome Sciences | |
Belgium | European Federation of Pharmaceutical Industries and Associations (EFPIA) | Magda Chlebus | Executive Director Science Policy and Regulatory Affairs | |
France | French Muscular Dystrophy Association, AFM-Téléthon | Marie-Christine Ouillade | AFM Board of Directors, AFM International Committee | |
USA | National Institute of Child Health and Human Development (NICHD) part of U.S. National Institutes of Health (NIH) | Melissa Parisi | Chief of Intellectual and Developmental Disabilities Branch | |
Australia | Rare Voices Australia | Nicole Millis | Executive Officer | |
China | Beijing Genomics Institute (BGI) | Ning Li | Director | |
Georgia | Georgian Foundation for Genetic and Rare Diseases (GeRaD) | Oleg Kvlividze | CEO | |
USA | National Organization for Rare Disorders (NORD) | Pamela Gavin | Executive Vice President | |
France | Agence Nationale de la Recherche (ANR) | Philippe Bouvet | Head of Biology & Health Department | |
USA | Office of Rare Diseases Research, National Center for Advancing Translational Sciences (NCATS) part of U.S. National Institutes of Health (NIH) | Philip J. (PJ) Brooks | Director | |
Peru | Federación Peruana de Enfermedades Raras | Pilar Estremadoyro Reyes | Vice-President | |
India | Organization for Rare Diseases India (ORDI) | Prasanna Kumar Shirol | Founder, Director Board | |
Germany | Federal Ministry of Education and Research (BMBF) | Ralph Schuster | Scientific Officer | |
India | Indian Organization for Rare Diseases (IORD) | Ramaiah Muthyala | President and CEO | |
USA | Chan Zuckerberg Initiative | Raquel Peck | International Strategist, Rare As One Project | |
Singapore | APARDO | Ritu Jain | President | |
Ghana | Rare Disease Ghana Initiative (RDGI) | Samuel Agyei Wiafe | Founder/Executive Director | |
Canada | Genome Canada | Sapna Mahajan | Director, Research and Innovation | |
USA | Genetic Alliance | Sharon Terry | President and CEO of Genetic Alliance, President of EspeRare | |
Netherlands | The Netherlands Organisation for Health Research and Development (ZonMw) | Sonja van Weely | Scientific Officer, Sounding Board Group National Plan Rare Diseases | |
Italy | Telethon Foundation | Stefano Benvenuti | Head of Public Affairs | |
Canada | GlobalSkin | Tammi Shipowick | Program Director | |
Belgium | Sanofi | Vinciane Pirard | Lead Scientific Advocacy and Insights - Global Medical Affairs Rare Diseases | |
Europe | EURORDIS - Rare Diseases Europe | Virginie Hivert | Therapeutic Development Director | |
Japan | Japan Agency for Medical Research and Development (AMED) | Susumu Kusunoki | Program Supervisor | |
Japan | Advocacy Service for Rare and Intractable Diseases’ multi-stakeholders in Japan (ASrid) | Yukiko Nishimura | President | |
USA | Alexion AstraZeneca Rare Disease | Wendy Erler | Vice President of Patient Experience, STAR and Advocacy | |
Switzerland | Roche | Waiting for the nomination of the new representative | ||
Switzerland | Ultragenyx Pharmaceutical Inc. | Waiting for nomination of new representative |
For information on becoming an IRDiRC member thus represented in the Consortium Assembly and Constituent Committees (see section here), please consult the Become a Funding Member or the Become an Umbrella Patient Advocacy Member.
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