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 | |
|---|---|---|---|---|
| Canada | Canadian Institutes for Health Research (CIHR) |  | Christopher McMaster (Chair) | Professor, Scientific Director |
| Italy | Telethon Foundation |  | Stefano Benvenuti (Vice Chair) | Head of Public Affairs |
| USA | National Institute of Neurological Disorders and Stroke (NINDS) part of U.S. National Institutes of Health (NIH) |  | Adam Hartman | Program Director |
| China | Hope for Rare Foundation |  | Boya Yu | Project Manager |
| France | Foundation for Rare Diseases |  | Daniel Scherman | Director |
| USA | Sanford Research |  | David Pearce | President of Innovation, Research & World Clinic |
| 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 |
| Italy | Istituto Superiore di Sanità (ISS) |  | Domenica Taruscio | 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 |
| Spain | National Institute of Health Carlos III (ISCIII) |  | Eva Bermejo-Sánchez | Director |
| Belgium | European Commission |  | Irene Norstedt | Director - People Directorate |
| 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 |
| South Korea | Korea Disease Control and Prevention Agency | Jiwon M. Lee | Director, Division of Rare Disease Management, Bureau of Chronic Disease Management | |
| 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 |
| USA | National Human Genome Research Institute (NHGRI) part of U.S. National Institutes of Health (NIH) |  | Lisa Chadwick | Program Director, Division of Genome Sciences |
| USA | Congressionally Directed Medical Research Programs (part of USAMRDC) |  | Kristy Lidie | Deputy Director for Program Management |
| France | French Muscular Dystrophy Association, AFM-Téléthon | Laure Sarraillon | 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 |
| Georgia | Georgian Foundation for Genetic and Rare Diseases (GeRaD) |  | Oleg Kvlividze | Executive Director |
| 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 |  | Philip J. (PJ) Brooks | Director |
| Germany | Federal Ministry of Education and Research (BMBF) |  | Ralph Schuster | Scientific Officer |
| USA | Chan Zuckerberg Initiative |  | Raquel Peck | International Strategist, Rare As One Project |
| Canada | Genome Canada |  | Sapna Mahajan | Director, Research and Innovation |
| Netherlands | The Netherlands Organisation for Health Research and Development (ZonMw) |  | Sonja van Weely | Scientific Officer, Sounding Board Group National Plan Rare Diseases |
| Japan | Japan Agency for Medical Research and Development (AMED) |  | Susumu Kusunoki | Program Supervisor |
| China | National Rare Diseases Registry System (NRDRS) |  | Zhang Shuyang | President |
| France | National Institute of Health and Medical Research (INSERM) | currently being nominated by the institution |