Vanessa Acero
LPCC-Licensed Mental Health Therapist
Jennifer Adair, PhD, FUNAS
Professor and Vice Chair, Department of Genetic & Cellular Medicine
UMASS Chan Medical School
Christophe Arbet-Engels, MD, PhD
Chief Medical Officer
X4 Pharmaceuticals
Danaé Bartke
Executive Director
HCU Network America
Claire Beggs
Executive Director, Global Regulatory Affairs and Drug Safety
Jazz Pharmaceuticals
Robyn Bent, MS, RN
Director, Patient-Focused Drug Development
CDER, FDA
Bruce Bloom, JD, DDS
Rare Disease Community Liaison
Healx
Philip J. Brooks, PhD
Acting Director, Division of Rare Diseases Research Innovation
National Center for Advancing Translational Sciences (NCATS), NIH
R. Duane Clark
General Manager, U.S. Rare Diseases
Sanofi
Micah Clayborne
Founder and Chief Executive Officer
Transplant Teenz
Kelly Esperias
Chief Strategy & Operations Officer
NORD
Miguel Fernández Alcalde
President
EMD Serono
Terence Flotte, MD
President
American Society for Gene & Cell Therapy (ASGCT)
Brooke Foster
Student
Rider University
Stephanie Fradette, MD
Head of Neuromuscular Development Unit
Biogen
Brooke Friedman, BA
Neuroscience PhD Student; New York Ambassador
Icahn School of Medicine at Mt. Sinai; NORD Rare Action Network®
Avery Garrison
Rare Community Member
Amy Gaviglio, MS, CGC
Founder and Chief Executive Officer
Connetics Consulting LLC
Pamela Gavin
Chief Executive Officer
NORD
Sarah Gheuens, MD, PhD
Chief Medical Officer, Head of R&D
Agios
Kaushik Ghosal, PhD
Amyloidosis Research Consortium ASPIRE Collaboration
Katie Gillick
Rare Community Member
John Greally, MD
Children’s Hospital at Montefiore Einstein
Lee Greenwood
Rare Community Member
Nadine Grossman, M.Sc.
Vice Chair
FOP Germany/IFOPA
Cynthia Grossman, PhD
Director, Division of Patient-Centered Development
CDRH, FDA
Allison Herrity, MPH
Senior Policy Analyst
NORD
Terri Klein, CNPM, MPA
President and Chief Executive Officer
National MPS Society
Nerissa Kreher, MD, MBA
Chief Medical Officer
Alltrna
Mimi Lee, MD, PhD
Program Manager, Health Science Futures
ARPA-H
Martin Mackay, PhD
Co-Founder
RallyBio
Ray Merenstein
Parent, Director of NAMI CO
Colorado Rare Disease Advisory Council
Alan M. Miller, MD, PhD
Chief Medical Officer
TD2 Oncology
Vinod Mitta
Director
Seamless Care Models Group, CMS Innovation Center, US HHS
Jana Monaco
Rare Caregiver; Virginia Ambassador
NORD Rare Action Network®
Edward Neilan, MD, PhD
Chief Medical and Scientific Officer
NORD
Sean Nolan
Chief Executive Officer
Taysha Gene Therapies
Catherine Owen Adams, BSc.
Chief Executive Officer
Acadia Pharmaceuticals
Jill Pollander, RN, MSN
Vice President of Patient Services
NORD
Mike Porath
Chief Executive Officer and Founder; Executive Director
The Mighty; Dup15q Alliance
Maha Radhakrishnan, MD
Executive Partner
Sofinnova Investments
Amy Rick, JD
Director of Strategic Coalitions
FDA’s Rare Disease Innovation Hub
Dylan Ritter, PhD
Director of Scientific and Clinical Initiatives
Dup15Q Alliance
Philip Ross
Vice Chairman
Jefferies LLC
Anindita (Annie) Saha
Associate Director for Data Science and Artificial Intelligence Policy (acting), Office of Medical Policy
CDER, FDA
David Scheer
President
Scheer & Company
Sheldon Schuster, PhD
Professor and President Emeritus; Vice Chair
Keck Graduate Institute; NORD Board of Directors
Cheryl Schwartz
Senior Vice President, U.S. Rare Disease Business Unit Lead and U.S. Commercial Operations
Takeda
John Scott, PhD
Director, Division of Biostatistics
CBER, FDA
Tracey Sikora
Vice President of Research and Clinical Programs
NORD
Stephen Squinto, PhD
Chief Investment Officer
J.P. Morgan Life Science Private Capital
Theresa Strong
Director of Research Programs
Foundation for Prader-Willi Research
Michelle Tarver, MD, PhD
Director
Center for Devices and Radiological Health (CDRH), FDA
David Tischler
Chief Executive Officer
CureTrust
Andres Trevino
Global Head of Patient Advocacy
Chiesi
Fumihiko Urano, MD, PhD
Samuel E. Schechter Professor in Medicine
Washington University School of Medicine
Jian Wang, PhD
Vice President, Digital Innovation
IQVIA R&DS
Advait Wattal
Ambassador; Student
NORD Rare Action Network®; University of Pennsylvania
Sheila Wilson
Vice President, Clinical Operations and Data Management
Orchard Therapeutics