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
Marie-Christine Ouillade
AFM Board of Directors, AFM International Committee
Kristy Lidie
Deputy Director for Program Management
Daniel Scherman
Director
Domenica Taruscio
Director
???
awaiting appointment
David Pearce (Chair)
Sanford School of Medicine of the University of South Dakota
Susumu Kusunoki
Program Supervisor
Li Linkang
Executive President
Naveed Aziz
Vice President of Research and Innovation
Eva Bermejo-Sánchez
Director
Adam Hartman
Program Director
David Seo
Senior Vice President
Philippe Bouvet
Head of Biology & Health Department
Maria Pilar Aguar Fernandez
Director at the Directorate, People, Health and Society
Oleg Kvlividze
CEO
Tan Ee Shien
Head, Department of Genomic Medicine
Philip J. (PJ) Brooks
Director
Sonja van Weely
Scientific Officer, Sounding Board Group National Plan Rare Diseases
Maryna Polyakova
Translational Neuroscience WG Steward
Katherine Needleman
Director, Orphan Products Grants Program FDA/OOPD
Kristen Nowak
Director, Office of Population Health Genomics; Western Australia Department of Health
Jee young Kim
Director for Rare Disease Management, Department of Chronic Disease Prevention and Control
Jason Wan
Director, Mineralized Tissue Physiology Program
Integrative Biology and Infectious Diseases Branch
Raquel Peck
International Strategist, Rare As One Project
Ralph Schuster
Scientific Officer
Boya Yu
Project Manager
Melissa Parisi
Chief of Intellectual and Developmental Disabilities Branch
Zhang Shuyang
President
Anne-Cécile Desfaits
Associate Scientific Director
Stefano Benvenuti
Head of Public Affairs
Emmanuelle Genin
Director of Inserm Thematic Institute Genetics, Genomics & Bioinformatics
Faye H. Chen
Program Director, Rare Diseases and Integrated Physiology of Bone Program
Deborah Requesens
Director, JumpStart Program
Orphan Disease Center, University of Pennsylvania