IRDiRC members include:
- Funding organizations (i.e., funding bodies, groups of funders, companies) 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 | |
---|---|---|---|---|
Italy | Telethon Foundation | ![]() | Lucia Monaco (Chair) | Head, Research Impact and Strategic Analysis |
USA | Sanford Research | ![]() | David Pearce (Vice Chair) | President of Research, Director of Sanford Children's Health Research Center, Professor of Pediatrics |
USA | NIH / National Institute of Neurological Disorders and Stroke (NINDS) | ![]() | Adam Hartman | Program Director |
USA | Sanofi Genzym | ![]() | Alaa Hamed | Global Head Sanofi Genzyme Rare Disease Medical Affairs, Sanofi Genzyme |
Latin America | Iberoamerican Alliance for Rare Diseases (ALIBER) | ![]() | Alba Ancochea | Advocacy Advisor |
Italy | Chiesi Pharmaceutici | ![]() | Andrea Chiesi | R&D Director, Portfolio Manager |
USA | NIH / National Center for Advancing Translational Sciences (NCATS) | ![]() | Anne Pariser | Director at Office of Rare Diseases Research |
France | National Institute of Health and Medical Research (INSERM) | ![]() | Catherine Nguyen | Director of the Thematic Institute of the Genetics, Genomics and Bioinformatics at INSERM |
USA | Recursion Pharmaceuticals, Inc | ![]() | Chris Gibson | CEO & Co-Founder |
USA | Global Genes | ![]() | Christian Rubio | Vice-President of Strategic Advancement |
UK | Congenica | ![]() | Christina Waters | SVP, Global Genomic Insights and Solutions, Congenica |
Canada | Canadian Institutes for Health Research (CIHR) | ![]() | Christopher McMaster | Professor, Scientific Director |
Canada | Genome Canada | ![]() | Cindy Bell | Executive Vice-President |
United Kingdom | Loulou Foundation | ![]() | Daniel Lavery | Chief Scientific Officer |
France | French Foundation for Rare Diseases | ![]() | Daniel Scherman | President |
Europe | European Joint Programme on Rare Diseases (Inserm) | ![]() | Daria Julkowska | Coordinator, IRDiRC Scientific Secretariat |
Italy | Istituto Superiore di Sanità (ISS) | ![]() | Domenica Taruscio | Director |
France | Agence nationale de la recherche (ANR) | ![]() | Dominique Dunon-Bluteau | Director of Biology & Health department |
International | Rare Diseases International (RDI) | ![]() | Durhane Wong-Rieger | Chair of the RDI Council |
Botswana | Botswana Organization for Rare Diseases (BORDIS) | ![]() | Eda Selebasto | Founder & Chairperson |
USA | NIH / National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) | ![]() | Faye H. Chen | Program Director, Rare Diseases and Integrated Physiology of Bone Program |
Europe | E-RARE Consortium | ![]() | Florence Guillot | Project Manager |
Europe | European Commission | ![]() | Irene Norstedt | Head of Unit, Innovative and Personalised Medicine Unit, DG Research and Innovation |
USA | NIH / National Institute of Dental and Craniofacial Research (NIDCR) | ![]() | Jason Wan | Director, Mineralized Tissue Physiology Program Integrative Biology and Infectious Diseases Branch |
USA | Pfizer | ![]() | Katherine Beaverson | Patient Advocacy Director, Rare Disease Research Unit |
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 | NIH / National Human Genome Research Institute (NHGRI) | ![]() | Lisa Chadwick | Program Director, Division of Genome Sciences |
USA | Takeda Pharmaceuticals | ![]() | Madhu Natarajan | Head, Rare Diseases DDU Research, Takeda Pharmaceuticals |
Spain | Instituto de Salud Carlos III (ISCIII) | ![]() | Manuel Posada | Director of the Institute of Rare Diseases Research (IIER) |
France | French Muscular Dystrophy Association, AFM-Téléthon | ![]() | Marie-Christine Ouillade | AFM Board of Directors, AFM International Committee |
Switzerland | Roche | ![]() | Mathew Pletcher | Head of Rare Disease Discovery |
USA | NIH / National Institute of Child Health and Human Development (NICHD) | ![]() | Melissa Parisi | Chief of Intellectual and Developmental Disabilities Branch |
Australia | Rare Voices Australia | ![]() | Nicole Millis | Executive Officer |
China | BGI | ![]() | Ning Li | CEO, BGI Europe |
Georgia | Georgian Foundation for Genetic and Rare Diseases (GeRaD) | ![]() | Oleg Kvlividze | CEO |
Canada | Canadian Organization for Rare Disorders (CORD) | ![]() | Oxana Illiach | CORD Board Member |
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 (I-ORD) | ![]() | Ramaiah Muthyala | President and CEO |
Asia Pacific | APARDO | ![]() | Ritu Jain | President of APARDO |
France | Lysogene | ![]() | Samantha Parker | Chief Patient Access Officer at Lysogene |
Ghana | Rare Disease Ghana Initiative (RDGI) | ![]() | Samuel Agyei Wiafe | Founder/Executive Director |
USA | NIH / National Cancer Institute (NCI) | Satish Gopal | Director, Center for Global Health | |
USA | Genetic Alliance | ![]() | Sharon Terry | President and CEO of Genetic Alliance, President of EspeRare |
USA | NIH/ National Eye Institute (NEI) | Shefa Gordon | Associate Director, Office of Program Planning and Analysis (OPPA) | |
USA | Cydan | ![]() | ShiYin Foo | Chief Medical Officer |
Netherlands | The Netherlands Organisation for Health Research and Development (ZonMw) | ![]() | Sonja van Weely | Scientific Officer, Sounding Board Group National Plan Rare Diseases |
Kingdom of Saudi Arabia | Saudi Human Genome Project | ![]() | Sultan Turki AlSedairy | Director King Faisal Specialist Hospital and Research Centre |
Switzerland | Ultragenyx | ![]() | Tom Pulles | Head of Medical Affairs & Patient Advocacy |
USA | National Organization for Rare Disorders (NORD) | ![]() | Vanessa Boulanger | Director of Research Programs |
Europe | EURORDIS-Rare Diseases Europe | ![]() | Virginie Bros-Facer | Scientific Director |
USA | illumina Inc. | ![]() | Volker Liebenberg | Director Medical Affairs EMEA, Illumina Inc. |
United Kingdom | National Institute for Health Research (NIHR) | ![]() | Willem Ouwehand | Professor of Experimental Hematology University Cambridge |
Japan | Japan Agency for Medical Research and Development (AMED) | ![]() | Yoshinao Mishima | President of AMED |
South Korea | Korea National Institute of Health (KNIH) | ![]() | Younjhin Ahn | Director of Division of Rare Diseases |
Japan | Advocacy Service for Rare and Intractable Diseases’ multi-stakeholders in Japan (ASrid) | ![]() | Yukiko Nishimura | President |
China | National Rare Diseases Regisrty System of China (NRDRS) | ![]() | Zhang Shuyang | Chair |
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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