Member Organizations


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
CountryOrganization RepresentativeTitle
USASanford ResearchDavid Pearce (Chair)President of Innovation, Research & World Clinic
France InnoSkelSamantha Parker (Vice Chair)Chief Patient Access Officer
USANational Institute of Neurological Disorders and Stroke (NINDS) part of U.S. National Institutes of Health (NIH)Adam HartmanProgram Director
USAIllumina, Inc.Adriana Huertas-VazquezSenior Director, Global Medical Affairs
USASanofi GenzymeAlaa HamedGlobal Head of Medical Affairs Rare Diseases
FranceNational Institute of Health and Medical Research (INSERM)Catherine NguyenDirector of the Thematic Institute of the Genetics, Genomics and Bioinformatics
USARecursion Pharmaceuticals, IncChris GibsonCEO & Co-Founder
CanadaCanadian Institutes of Health Research (CIHR)Christopher McMasterProfessor, Scientific Director
UKLoulou FoundationDaniel LaveryChief Scientific Officer
France Foundation for Rare DiseasesDaniel SchermanDirector
ItalyChiesi Farmaceutici S.p.A.Diego ArdigòHead of Global Rare Diseases Research and Development
ItalyIstituto Superiore di Sanità (ISS)Domenica TaruscioDirector
CanadaRare Diseases International (RDI)Durhane Wong-RiegerChair of the RDI Council
BotswanaBotswana Organization for Rare Diseases (BORDIS)Eda SelebatsoFounder & Chairperson
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
SwitzerlandUltragenyx Pharmaceutical Inc.Grania CrowleyHead of EU Patient Advocacy and Public Affairs
BelgiumEuropean CommissionIrene NorstedtDirector - People Directorate
Canada Genome CanadaIvana CecicDirector, Corporate Development (Health Portfolio)
South KoreaKorea Disease Control and Prevention AgencyJiwon M. LeeDirector, Division of Rare Disease Management, Bureau of Chronic Disease Management
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
PeruIberoamerican Alliance for Rare Diseases (ALIBER)Karla Ruiz de CastillaSecretary of ALIBER and President of ESPERANTRA
USAPfizerKatherine BeaversonExecutive Director, Head of Patient Advocacy and External Engagement, Rare Disease Research Unit
USAFood and Drug Administration, Office of Orphan Products Development (FDA/OOPD)Katherine NeedlemanDirector, Orphan Products Grants Program FDA/OOPD
South AfricaRare Diseases South AfricaKelly du PlessisCEO & Founder
China Chinese Organization for Rare Disorders (CORD)Kevin HuangFounder & President
Australia Western Australian Department of HealthKristen NowakDirector, Office of Population Health Genomics; Western Australia Department of Health
USANational Human Genome Research Institute (NHGRI) part of U.S. National Institutes of Health (NIH)Lisa ChadwickProgram Director, Division of Genome Sciences
USATakeda PharmaceuticalsMadhu NatarajanHead, Rare Diseases DDU Research
SpainInstituto de Salud Carlos III (ISCIII)Manuel PosadaDirector at Research Institute for Rare Diseases (IIER)
USAGlobal GenesMaria Della RocaSr. Director of Patient Services
France French Muscular Dystrophy Association, AFM-TéléthonMarie-Christine OuilladeAFM Board of Directors, AFM International Committee
France LysogeneMarie TradChief Medical Officer
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
AustraliaRare Voices AustraliaNicole MillisExecutive Officer
China Beijing Genomics Institute (BGI)Ning LiDirector
GeorgiaGeorgian Foundation for Genetic and Rare Diseases (GeRaD)Oleg KvlividzeCEO
USA National Organization for Rare Disorders (NORD)Pamela GavinExecutive Vice President
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 Health (NIH)Philip J. (PJ) BrooksDirector
IndiaOrganization for Rare Diseases India (ORDI)Prasanna Kumar ShirolFounder, Director Board
GermanyFederal Ministry of Education and Research (BMBF)Ralph SchusterScientific Officer
IndiaIndian Organization for Rare Diseases (IORD)Ramaiah MuthyalaPresident and CEO
USA Chan Zuckerberg InitiativeRaquel PeckInternational Strategist, Rare As One Project
SingaporeAPARDORitu JainPresident
Ghana Rare Disease Ghana Initiative (RDGI)Samuel Agyei WiafeFounder/Executive Director
USANational Cancer Institute (NCI) part of U.S. National Institutes of Health (NIH)Satish GopalDirector, Center for Global Health
USA Genetic AllianceSharon TerryPresident and CEO of Genetic Alliance, President of EspeRare
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
Europe EURORDIS - Rare Diseases EuropeVirginie HivertTherapeutic Development Director
UK National Institute for Health Research (NIHR)Willem OuwehandProfessor of Experimental Hematology University of Cambridge
JapanJapan Agency for Medical Research and Development (AMED)Susumu KusunokiProgram Supervisor
JapanAdvocacy Service for Rare and Intractable Diseases’ multi-stakeholders in Japan (ASrid)Yukiko NishimuraPresident
ChinaNational Rare Diseases Registry System of China (NRDRS)Zhang ShuyangChair
SwitzerlandRocheWaiting for the nomination of the 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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