The IRDiRC Funders Constituent Committee (FCC) brings together representatives from the public research funding members of IRDiRC, which include national and international governmental and non-profit funding bodies. The FCC’s principal mission is to facilitate high-level coordination of funding initiatives to maximize the impact of rare diseases research projects by aligning strategies, avoiding unnecessary duplication, and identifying research funding gaps. The FCC is currently developing a platform to coordinate and prioritize research funding efforts, identify mechanisms to enable international funding collaborations, and explore funding opportunities on the ethical, legal and social implications (ELSI) of rare diseases research. In the long term, the FCC also intends to foster rare diseases research and to advocate for access to diagnosis and treatment in low- and middle-income countries, in keeping with IRDiRC’s Goals and Vision for 2017-2027.
| Country | Organization | Representative | Title | |
|---|---|---|---|---|
| USA | NIH / National Institute of Neurological Disorders and Stroke (NINDS) |  | Adam Hartman (Vice Chair) | Program Director |
| USA | NIH / National Center for Advancing Translational Sciences (NCATS) |  | Anne Pariser | Director, NCATS |
| France | National Institute of Health and Medical Research (INSERM) |  | Catherine Nguyen | Director of the Thematic Institute of the Genetics, Genomics and Bioinformatics at INSERM |
| 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 Program on Rare Diseases (Inserm) |  | Daria Julkowska (Chair, transition position) | Coordinator, IRDiRC Scientific Secretariat |
| USA | Sanford Research |  | David Pearce | President of Research, Director of Sanford Children's Health Research Center, Professor of Pediatrics |
| Belgium | European Organisation for Treatment & Research on Cancer (EORTC) |  | Denis Lacombe | Director General |
| Italy | Istituto Superiore di Sanità (ISS) |  | Domenica Taruscio | Director |
| France | Agence nationale de la recherche (ANR) |  | Dominique Dunon-Bluteau | Director of Biology & Health department |
| USA | NIH / National Cancer Institute (NCI) |  | Edward L. Trimble | Director, NCI Center for Global Health |
| 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 |
| Finland | Academy of Finland |  | Heikki Vilen | Science Adviser |
| 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 | Food and Drug Administration, Office of Orphan Products Development (FDA/OOPD) |  | Katherine Needleman | Director, Orphan Products Grants Program FDA/OOPD |
| 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 |
| Italy | Telethon Foundation |  | Lucia Monaco | Head, Research Impact and Strategic Analysis |
| Japan | Japan Agency for Medical Research and Development (AMED) |  | Makoto Suematsu | President |
| Spain | National Institute of Health 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 |
| USA | NIH / National Institute of Child Health and Human Development (NICHD) |  | Melissa Parisi | Chief of Intellectual and Developmental Disabilities Branch |
| Georgia | Georgian Foundation for Genetic and Rare Diseases (GeRaD) |  | Oleg Kvlividze | Executive Director |
| Germany | Federal Ministry of Education and Research (BMBF) |  | Ralph Schuster | Scientific Officer |
| USA | NIH/ National Eye Institute (NEI) |  | Santa J. Tumminia | Associate Director for Strategic Science Initiatives & Programs and Project 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 |
| United Kingdom | National Institute for Health Research (NIHR) |  | Willem Ouwehand | Professor of Experimental Hematology University Cambridge |
| South Korea | Korea National Institute of Health (KNIH) |  | Younjhin Ahn | Director of Division of Rare Diseases |
| China | National Rare Diseases Regisrty System of China (NRDRS) |  | Zhang Shuyang | Chair |
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