![]() Kristen Angell Associate Director of Advocacy NORD | ![]() Hannah Armstead GFPD Diversity Committee Board Member, Sibling Caregiver and Advocate | ![]() Christopher Austin , MD Director National Center for Advancing Translational Sciences National Institutes of Health |
![]() Nick Bath Director US Senate HELP Committee | ![]() Jennifer Beck American Porphyria Foundation | ![]() Susan Berry , MD Professor, Division of Genetics and Metabolism Departments of Pediatrics and Genetics, Cell Biology & Development University of Minnesota |
![]() Vishal Bhatnagar , MD Associate Director for Patient Outcomes Oncology Center of Excellence, FDA | ![]() Fritz Bittenbender Senior Vice President, Access and External Affairs Genentech | ![]() Vanessa Boulanger Director of Research Programs NORD |
![]() Danielle Boyce Associate Director of Research Programs NORD | ![]() Julie Breneiser Executive Director Gorlin Syndrome Alliance | ![]() Bert Bruce VIce President, Global Commercial Development, Rare Disease Pfizer Biopharmaceuticals Group |
![]() Melissa Bryce Gamble Co- Founder and Executive Director The Global Foundation for Peroxisomal Disorders | ![]() Kirk Campbell , MD Associate Professor of Medicine, Vice Chair for Diversity and Inclusion Director, Nephrology Fellowship Program Icahn School of Medice at Mount Sinai | ![]() Patrizia Cavazzoni , MD Deputy Director for Operations Center for Drug Evaluation and Research(CDER) , Food and Drug Administration |
![]() Dennis V. Chornenky , MBA, MPH, MS White House Presidential Innovation Fellow, Executive Office of the Presidents Office of Science and Technology Policy | ![]() Debbie Drell Director of Membership NORD | ![]() Eric Dube CEO Retrophin |
![]() Khair El Zarrad , PhD Deputy Director, Office of Medical Policy - Center for Drug Evaluation and Research Food & Drug Administration | ![]() David Fajgenbaum , MD, MBA, MSc, FCPP Co-founder and Executive Director of the Castleman Disease Collaborative Network (CDCN), Assistant Professor of Medicine in Translational Medicine & Human Genetics at the University of Pennsylvania, and Associate Director, Patient Impact for the Penn Orphan Disease Center | ![]() Pamela Gavin Chief Strategy Officer NORD |
![]() James Gellar , MD, FAAP Professor of Pediatirics Medical Director, Kidney & Liver Tumor Programs Director, Advanced Cancer Therapeutics Network Director, Pilot Translational and Clinical Studies Program, CCTST Cincinnati Children's Hospital Medical Center, Division of Oncology | ![]() Adam Gluck Head, U.S. and Sanofi Genzyme Corporate Affairs Sanofi Genzyme | ![]() Linda Gouler Blount President & Chief Executive Officer Black Women's Health Imperative |
![]() Jason Hafler Managing Director Sanofi Ventures | ![]() Stephen M. Hahn , MD Commissioner US Food and Drug Administration | ![]() Martin Ho , MD Associate Director, Quantitative Patient Inputs & RWE Food and Drug Administration |
![]() Kay Holcombe , MS Critical Path Institiute, NORD Board Member | ![]() Charles Holmes , MD Director, Center for Innovation in Global Health, Professor of Medicine, Georgetown University School of Medicine, and Distinguished Scholar and Program Director, O'Neill Institute for National and Global Health Law Georgetown University | ![]() John Hopper President Fibrolamellar Cancer Foundation |
![]() Alice Houk Senior Director of Health Professional Programs Aplastic Anemia & MDS International Foundation | ![]() Julian Isla President & Founder Foundation 29 | ![]() Hylton Joffe , MD Acting Director Office of Rare Diseases, Pediatrics, Urologic and Reproductive Medicine at FDA |
![]() Maha Katabi General Partner Sofinnova Investments | ![]() David Keane Senior Genomic Consultant GeneDx | ![]() Robin Kelley Representative D- IL 2nd Disctrict State of Illinois |
![]() Walter Koroshetz , MD, PhD Director National Institute of Neurological Disorders and Stroke | ![]() Peter Langmuir , MD Group Vice President, Oncology Targeted Therapeutics Incyte | ![]() Larissa Lapteva , MD Associate Director, DCEPT/OTAT Center for Biologics Evaluation and Research Food and Drug Administration |
![]() Jane Larkindale Executive Director Duchenne Regulatory Science Consortium, Rare Diseases Cures Accelerator- Data and Analytics Platform | ![]() Camilla Lauritzen MSc, MCC, MMBA, Chief Patient Officer Leo Pharma | ![]() Yann le Cam Chief Executive Officer EURORDIS |
![]() Ryan Long Deputy Staff Director House Committee on Energy & Commerce | ![]() Martin Mackay , Pharma PhD Co-Founder Rallybio | ![]() Kira Mann Chief Executive Officer Mito ACTION |
![]() Peter Marks , MD, PhD Director CBER FDA | ![]() Willam Marsh , MD State Representative, NH | ![]() Janet Maynard , MD, MHS Director, Office of Orphan Products Development Food and Drug Administration |
![]() Michelle McMurry- Heath , MD, PhD President and Chief Executive Officer Biotechnology Innovation Organization (BIO) | ![]() Amy Medina Board of Directors CureSMA | ![]() Randy Milby Founder, Chief Executive Officer Hillstream BioParma |
![]() Kristi Mitchell , MPH Practice Director, Center for Healthcare Transformation Avalere Health | ![]() Kevin Mott Member, Board of Directors NephCure Kidney Institute | ![]() Christine Munro Children's Hospital of Pittsburgh (CHOP) |
![]() Francois Nader , MD, MBA Chairman Acceleron | ![]() Miriam O'Day President & CEO Alpha-1 Foundation | ![]() Corrie Painter , PhD Associate Director of Operations and Scientific Outreach for the Broad Cancer Program, Associate Director of Count Me In Broad Institute |
![]() Jim Palma Executive Director TargetCancer Foundation | ![]() Mike Porath Founder & CEO The Mighty | ![]() Deanna Portero Management Analyst, Office of Rare Diseases Research (ORDR) National Center for Advancing Translational Sciences (NCATS) |
![]() Stuart Portman Health Policy Advisor US Senate Committee on Finance | ![]() Wendell Primus Senior Policy Advisor on Budget and Health to Congresswoman Nancy Pelosi (D-CA) | ![]() Debra Regier Childrens National and the Rare Disease Institute |
![]() Karlyne Reilly , PhD Director Rate Tumor Initiative, CCR, NCI | ![]() Donna Roscoe , PhD Food & Drug Administration | ![]() Heidi Ross Director Of Policy NORD |
![]() Peter Saltonstall President and CEO NORD | ![]() Terence Sanger , MD, PhD, CHOC Vice President for Research and Chief Scientific Officer CHOC Children's Hospital of Orange County | ![]() Lisa Sarfaty Director of Strategic Planning & Project Development NORD |
![]() David Scheer Scheer & Company Inc | ![]() Allison Seebald Senior Research Programs Manager NORD | ![]() Sandra Sermone President/Executive Director ADNP Kids Research Foundation |
![]() Shoshana Shendelman , PhD Founder & CEO Applied Therapeutics | ![]() Lydia Shenouda , PharmaD Sr. Scientific Director, Global Medical Affairs Novartis Gene Therapies | ![]() Rachel Sher Vice President, Policy and Regulatory Affairs NORD |
![]() Oodaye Shukla Eversana | ![]() Mark Sleeper Cystic Fibrosis Foundation | ![]() Paul Solari Global Medical Lead, Hemophilia BioMarin Pharmaceutical Inc |
![]() Shafali Spurling Jeste , MD, FAAN Associate Professor in Psychiatry, Neurology and Pediatrics NORD Board Member UCLA David Geffen School of Medicine Los Angeles, CA | ![]() Heather Stone Health Science Policy Analyst Food & Drug Administration | ![]() Theresa Strong , PhD Director of ResearchPrograms Foundation for Prader-Willi Research |
![]() Kathleen Sullivan , MD, PhD Professor of Pediatrics, Wallace Chair of Pediatrics Division of Allergy Immunology CHOP (Children's Hopsital of Philadelphia) | ![]() Marshall Summar , MD Division Chief, Genetics and Metabolism, Director, Rare Disease Institute Children's National | ![]() Danyelle Sun Wisconsin Rare Action Network Volunteer State Ambassador NORD |
![]() Phillip Tai , MD Assistant Professor, Director VIDE Program Horae Gene Therapy Center, Department of Microbiology and Physiological Systems University of Massachusetts Medical School | ![]() Brooke Thomas Rare Action Network, NORD | ![]() Lisa Anne Thompson Taylor Chief Executive Officer Board Veritas |
![]() Laura Trutoiu , PhD Director of Research Association for Creatine Deficiencies | ![]() Karmen Trzupek , MS, CGC Director, Clinical Trial Services Director, Ocular & Rare Disease Genetics Services InfomedDNA | ![]() Charles Venditti , MD, PhD Head, Organic Acid Research Section Senior Investigator, National Human Genome Research Institute National Institutes of Health |
![]() Vanessa Vogel-Farley Executive Director Dup15q Alliance | ![]() Ashley Ward , MD Senior Director Clinical Development Foundation Medicine Inc. | ![]() Monica Webb Hooper , PhD Deputy Director National Institute on Minority Healh and Health Disparities National Institutes of Health |
![]() Durhane Wong-Rieger , PhD President and CEO Canadian Organization for Rare Disorders | ![]() Mark Yale Executive Director International Pemphigus and Pemphigoid Foundation (IPPF) | ![]() Kate Zhang , PhD VP of Biological Development Editas Medicine |