![]() Amanda Aikulola President Dysautonomia Support Network | ![]() Aishwarya Arjunan Clinical Product Specialist Myriad Women’s Health | ![]() Chris Austin MD Director, National Center for Advancing Translational Sciences (NCATS) National Institutes of Health (NIH) |
![]() Erica Barnes Minnesota Rare Action Network® Ambassador NORD | ![]() Terry Jo V. Bichell, MPH, PhD Tennessee Rare Action Network® Ambassador NORD | ![]() Lara Bloom Executive Director, International The Ehlers-Danlos Society |
![]() John Boyle President and CEO Immune Deficiency Foundation | ![]() Patrick Collins Senior Director, Global Healthcare Policy and External Affairs CSL Behring | ![]() Marie Conley Founder The Conley Cushing’s Disease Fund and Interim Chairman, PA Rare Disease Advocacy Council |
![]() Joslyn Crowe Executive Director National Neimann-Pick Disease Foundation | ![]() Elizabeth Dannenberg Patient | ![]() Debbie Drell Director of Membership NORD |
![]() Eric Dube President and Chief Executive Officer Retrophin | ![]() Tim Ehrhard Director of Information Technology NORD | ![]() Natacha Esber |
![]() Deborah Fowler (Settig) President and Founder Soft Bones | ![]() Jennifer Fox Cohead, Health Care Investment Banking Citibank | ![]() Beverley Francis-Gibson MA President and Chief Executive Officer Sickle Cell Disease Association of America |
![]() Jim Geraghty formerly Third Rock Ventures | ![]() Susan Gregurick, PhD Associate Director for Data Science National Institute of General Medical Sciences, NIH | ![]() Scott Gottlieb, MD American Enterprise Institute |
![]() Stefan Gross, PhD Director, Enzymology Agios Pharmaceuticals | ![]() Moira A. Gunn, PhD Associate Professor University of San Francisco | ![]() Patricia Jones, DrPH Program Director NCATS, NIH |
![]() Linda Hageman, RN Executive Director American Multiple Endocrine Neoplasia | ![]() John Hopper President / Executive Director Fibrolamellar Cancer Foundation | ![]() Neil Horikoshi CEO and Executive Director Aplastic Anemia and MDS International Foundation (AAMDSIF) |
![]() Philip Katz Partner Hogan Lovells US LLP | ![]() Lucas Kempf, MD Associate Director, Rare Diseases Program, CDER, Office of New Drugs FDA | ![]() Andrei Kindzelski, MD, PhD Program Director National Heart, Lung and Blood Institute, NIH |
![]() Sharon King NC Advisory Council | ![]() Camilla Krogh Lauritzen LEO Pharma A/S | ![]() Steven Lemery, MD Associate Deputy Director Division of Oncology Products, FDA |
![]() Nick Leschly Chief bluebird bluebird bio | ![]() Will Lewis President and Chief Executive Officer Insmed | ![]() Peter Marks, MD, PhD Director, Center for Biologics Evaluation and Research (CBER) Food and Drug Administration (FDA) |
![]() Janet Maynard, MD, MHS Director, Office of Orphan Products Development FDA | ![]() Pooja Merchant Head, Patient Partnerships and Engagement Oncology Global Medical Affairs Bayer Pharmaceuticals | ![]() Kelly Mercier, PhD Director of Medical and Scientific Affairs Inivata Limited |
![]() Theresa Mullin Associate Director for Strategic Initiatives CDER, FDA | ![]() Francois Nader, MD, MBA Chairman Acceleron Pharma | ![]() Gina Parziale |
![]() Tai Pasquini | ![]() Steven D. Pearson, MD, MSc Founder and President Institute for Clinical and Economic Review (ICER) | ![]() Vasum Peiris, MD Chief Medical Officer Pediatrics and Special Populations, Center for Devices and Radiological Health (CDRH), FDA |
![]() Denise Perry Associate Director Clinical Laboratory, Illumina | ![]() Karen Pignet-Aiach Founder, Chief Executive Officer and Board of Directors Chairperson Lysogene | ![]() Wayne Pines President, Health Care APCO Worldwide |
![]() Amy Price Rarallel, LLC | Tejashri Purohit-Sheth, MD Director Division of Clinical Evaluation and Pharmacology Toxicology (DCEPT), CBER, FDA | ![]() Debra Regier MD, PhD Children’s National Medical Center |
![]() Lora Reineck, MD Program Director National Heart, Lung and Blood Institute, NIH | ![]() John Reynders Vice President, R&D Strategy, Program Management and Data Sciences Alexion | ![]() Jack Rollins Senior Policy Analyst National Association of Medicaid Directors |
![]() Dawn Rotellini Senior Vice President, Program Development National Hemophilia Foundation | ![]() Mark Rothera President and CEO Orchard Therapeutics | ![]() Peter L. Saltonstall President and Chief Executive Officer NORD |
![]() Bhaskar Sambasivan President, Patient Services and Chief Strategy Officer Eversana | ![]() Nina Schor, MD Deputy Director NINDS, NIH | ![]() Geetha Senthil, PhD Health Scientist Administrator Office of Genomic Research Coordination, NIH |
![]() Patricia Seymour CCRC, MA, CIP | ![]() Michael Sherman Chief Medical Officer Harvard Pilgrim | ![]() Norman E. “Ned” Sharpless, MD Acting Commissioner FDA |
![]() David Scheer President Scheer & Company, Inc. | ![]() Jeffrey Shuren, MD, JD Director Center for Devices and Radiological Health, FDA | ![]() Oodaye Shukla Chief Data and Analytics Officer HVH Precision Analytics |
![]() Eric Sid, MD Presidential Management Fellow NIH | ![]() Christine Simmon Senior Vice President, Policy and Strategic Alliances Executive Director Biosimilars Council, Association for Accessible Medicines | ![]() Lisa Sniderman King, MSc, CGC Interim Head, Medical Diagnostics and Strategic Partnerships Sanofi Genzyme |
![]() Susan Spinosa Patient | ![]() Peter Stein, MD Director Office of New Drugs, CDER, FDA | ![]() Kristin Stephenson Chief Policy and Community Engagement Officer Muscular Dystrophy Association |
![]() Holly Tabor Associate Professor of Medicine Stanford University Medical Center | ![]() Kalahn Taylor-Clark, PhD, MPH Global Head, Patient Solutions Sanofi Medical | ![]() John F. Tisdale, MD Senior Investigator National Heart, Lung and Blood Institute, NIH |
![]() R. Nolan Townsend Regional President, North America Rare Disease Business Pfizer | ![]() Stephanie Uder Vice President Product Management Accredo Specialty Pharmacy | ![]() Jodie Vento Chair, NSGC Access and Services Committee Children's Hospital Pittsburgh |
![]() Janet Woodcock, MD Director, Center for Devices and Radiological Health FDA | ![]() Brad Wong President and Chief Executive Officer Pulmonary Hypertension Association | ![]() Neil Versel Board Member Multiple System Atrophy Coalition |
![]() Benjamin Yerxa, PhD Chief Executive Officer Foundation for Fighting Blindness |