Funders Constituent Committee (FCC)

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.

CountryOrganization RepresentativeTitle
USANational Institute of Neurological Disorders and Stroke (NINDS) part of U.S. National Institutes of Health (NIH)Adam Hartman (Chair)Program Director
FranceNational Institute of Health and Medical Research (INSERM)Catherine Nguyen (Vice Chair)Director of the Thematic Institute of the Genetics, Genomics and Bioinformatics
CanadaCanadian Institutes for Health Research (CIHR)Christopher McMasterProfessor, Scientific Director
UKLoulou FoundationDaniel LaveryChief Scientific Officer
France Foundation for Rare DiseasesDaniel SchermanDirector
USASanford ResearchDavid PearcePresident of Innovation, Research & World Clinic
ItalyIstituto Superiore di Sanità (ISS)Domenica TaruscioDirector
USANational Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) part of U.S. National Institutes of Health (NIH)Faye H. ChenProgram Director, Rare Diseases and Integrated Physiology of Bone Program
BelgiumEuropean CommissionIrene NorstedtDirector - People Directorate
Canada Genome CanadaIvana CecicDirector, Corporate Development (Health Portfolio)
USANational Institute of Dental and Craniofacial Research (NIDCR) part of U.S. National Institutes of Health (NIH)Jason WanDirector, Mineralized Tissue Physiology Program
Integrative Biology and Infectious Diseases Branch
South KoreaKorea Disease Control and Prevention AgencyJiwon M. LeeDirector, Division of Rare Disease Management, Bureau of Chronic Disease Management
USAFood and Drug Administration, Office of Orphan Products Development (FDA/OOPD)Katherine NeedlemanDirector, Orphan Products Grants Program FDA/OOPD
Australia Western Australian Department of HealthKristen Nowak
Director, Office of Population Health Genomics
USANational Human Genome Research Institute (NHGRI) part of U.S. National Institutes of Health (NIH)Lisa ChadwickProgram Director, Division of Genome Sciences
SpainNational Institute of
Health Carlos III (ISCIII)
Manuel PosadaDirector at Research Institute for Rare Diseases (IIER)
France French Muscular Dystrophy Association, AFM-TéléthonLaure SarraillonAFM Board of Directors, AFM International Committee
USANational Institute of Child Health and Human Development (NICHD) part of U.S. National Institutes of Health (NIH)Melissa ParisiChief of Intellectual and Developmental Disabilities Branch
GeorgiaGeorgian Foundation for Genetic and Rare Diseases (GeRaD)Oleg KvlividzeExecutive Director
FranceAgence Nationale de la Recherche (ANR)Philippe BouvetHead of Biology & Health Department
USAOffice of Rare Diseases Research, National Center for Advancing Translational Sciences (NCATS) part of U.S. National Institutes of HealthPhilip J. (PJ) BrooksDirector
GermanyFederal Ministry of Education and Research (BMBF)Ralph SchusterScientific Officer
USA Chan Zuckerberg InitiativeRaquel PeckInternational Strategist, Rare As One Project
USANational Cancer Institute (NCI) part of U.S. National Institutes of Health (NIH)Satish GopalDirector, Center for Global Health
USANational Eye Institute (NEI) part of U.S. National Institutes of Health (NIH)Shefa GordonAssociate Director, Office of Program Planning and Analysis (OPPA)
NetherlandsThe Netherlands Organisation for Health Research and Development (ZonMw)Sonja van WeelyScientific Officer, Sounding Board Group National Plan Rare Diseases
ItalyTelethon FoundationStefano BenvenutiHead of Public Affairs
UKNational Institute for Health Research (NIHR)Willem OuwehandProfessor of Experimental Hematology University of Cambridge
JapanJapan Agency for Medical Research and Development (AMED)Susumu KusunokiProgram Supervisor
ChinaNational Rare Diseases Registry System of China (NRDRS)Zhang ShuyangChair