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 |
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Stefan Gross, PhD Director, Enzymology Agios Pharmaceuticals |
Moira A. Gunn, PhD Associate Professor University of San Francisco |
Patricia Jones, DrPH Program Director NCATS, NIH |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
