Vanessa Acero
LPCC-Licensed Mental Health Therapist
Jennifer Adair, PhD, FUNAS
Professor and Vice Chair, Department of Genetic & Cellular Medicine
UMASS Chan Medical School
Danaé Bartke
Executive Director
HCU Network America
Claire Beggs, BSc Hons, MTOPRA
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
Theresa Bourne, MD
Medical Officer
DRDMG/ORPURM/OND/CDER
Shelley Bowen
Director, Family Services and Advocacy
Barth Syndrome Foundation
Kevin Cancelliere
Senior Associate Director, Patient Marketing
LEO Pharma
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
Leigh Ann Fairley
Health Legislative Assistant, U.S. Representative Gus Bilirakis (FL-12)
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
Golie-Lorenzo Green
Rare Community Member
Lee Greenwood
Rare Community Member
Cynthia Grossman, PhD
Director, Division of Patient-Centered Development
CDRH, FDA
Nadine Groβmann, M.Sc.
Vice Chair
FOP Germany/IFOPA
Allison Herrity, MPH
Senior Policy Analyst
NORD
Leah M. Howard, JD
President and CEO
National Psoriasis Foundation
Tina Hu-Rodgers
Co-Leader, Life Sciences Industry Group
Buchanan Ingersoll & Rooney
Jay Keese
Principal, CEO
Capitol Advocates, LLC
Terri Klein, CNPM, MPA
President and Chief Executive Officer
National MPS Society
Matthew Klein, MD, MS, FACS
CEO
PTC Therapeutics
Naomi Knoble, PhD
Associate Director, Division of Clinical Outcome Assessment
CDER, FDA
Nerissa Kreher, MD, MBA
Chief Medical Officer
Alltrna
Mimi Lee, MD, PhD
Chief of Precision Medicine, GeneDX
ARPA-H
Leah M. Howard, JD
President and CEO
National Psoriasis Foundation
Martin Mackay, PhD
Co-Founder
RallyBio
Shawn McCandless, MD
Chair, Department of Genetics and Metabolism
Children’s Hospital Colorado
Reenie McCarthy
CEO
Stealth Biotherapeutics
Ray Merenstein
Parent, Director of NAMI CO
Colorado Rare Disease Advisory Council
Alan M. Miller, MD, PhD
Chief Medical Officer
TD2 Oncology
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
Dylan Ritter, PhD
Director of Scientific and Clinical Initiatives
Dup15Q Alliance
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
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
David Tischler
Chief Executive Officer
CureTrust
Emmelina Sophia Torres
Rare Community Member
Andres Trevino
Global Head of Patient Advocacy
Chiesi
Fumihiko Urano, MD, PhD
Samuel E. Schechter Professor in Medicine
Washington University School of Medicine
Christopher Viti
Rare Community Member
Jian Wang, PhD
Vice President, Digital Innovation
IQVIA R&DS
Advait Wattal
Ambassador; Student
NORD Rare Action Network®; University of Pennsylvania
Jackie Weinrich
Senior Health Policy Advisor, U.S. Representative Doris Matsui (CA-07)
Sheila Wilson
Vice President, Clinical Operations and Data Management
Orchard Therapeutics
Lynne Yao, MD
Director, Division of Pediatric and Maternal Health
CDER, FDA