2024 Speakers
Suchismita Acharya, Chief Executive Officer, AyuVis Research
Samuel Agyei Wiafe, Executive Director, Rare Disease Ghana Initiative
Paul Aliu, Head Global Governance Office, Novartis Chief Medical Office (CMO), Novartis
Irina Antonijevic, CMO, EveryONE Medicines
Ritu Baral, Managing Director And Senior Biotechnology Analyst, Cowen
Ron Bartek, President, Co-Founder, Friedreich's Ataxia Research Alliance
Sulagna Bhattacharya, Chief Executive Officer, Nanoscope Therapeutics
Natasha Bonhomme, Chief Strategy Officer, Genetic Alliance, Founder, Expecting Health
Wendy Borsari, Sr. Manager of Patient Advocacy, Tenaya Therapeutics
PJ Brooks, Acting Director, Office of Rare Diseases Research, National Center for Advancing Translational Sciences (NCATS), National Institutes of Health
Benjamin Brown, Executive Director, American Society of Pharmacovigilance
Karin Butler, Head of Technical Research, York Health Economics Consortium
Raquel Cabo, VP, Global Commercial Strategy, Ovid Therapeutics
Grant Castor, SVP Commercial Strategy & Operations, Sentynl Therapeutics
Richard Chapman, Chief Science Officer, Innovation and Value Initiative
Nimi Chhina, Executive Director, BioMarin Pharmaceutical Inc.
Carole Cramer, Chief Executive Officer and CoFounder, Biostrategies
Joslyn Crowe, Executive Director, National Niemann Pick Disease Foundation Inc
Michelle Davis, Executive Director, International Fibrodysplasia Ossificans Progressiva Association
Kate Donigan, Senior Director, Science & Regulatory Policy, Global Policy, Government, & Patient Affairs, Sarepta Therapeutics
Vivian Fernandez, Director Of Patient Advocacy, Regenxbio Inc
Albert Freedman, Psychologist, Rare Counseling
Neha Gandhi, Head of Global Patient Advocacy and Engagment, Ascendis Pharma A/S
Pamela Gavin, Executive Vice President, National Organization for Rare Disorders (NORD)
Diego Fernando Gil Cardozo, President, Enfermedades Raras en el Caribe y América Latina (ERCAL)
Sarah Glass, Chief Operating Officer, n-Lorem Foundation
Laura Hopkins, Associate Director, Critical Path Institute
Andria Joseph, Project Director Outcomes Research, York Health Economics Consortium
Emil Kakkis, Chief Executive Officer, Ultragenyx Pharmaceutical
Ken Kengatharan, Managing General Partner, Atheneos Ventures
Terri Klein, President And Chief Executive Officer, National M.P.S. Society
Augusta Elizabeth Koroma, Chief Executive Officer, Sickle cell Intervention U.K
Kollet Koulianos, Senior Payor Advisor, National Hemophilia Foundation
Shira Landskroner-Eiger, Director, External Innovation Rare Disease, Ipsen
Larissa Lapteva, Associate Director, FDA
William Lin, Program Director, GARDaccess, Partnership for Quality Medical Donations (PQMD)
Robert Long, Executive Director, Uplifting Athletes
Erica Lyons, Bioinformatics Analyst, Frederick National Laboratory for Cancer Research
Mark Manfredi, Chief Executive Officer, Ikena Oncology
Peter Marks, Director, Center For Biologics Evaluation And Research (CBER), U.S. Food and Drug Administration
Reenie McCarthy, Chief Executive Officer, Stealth BioTherapeutics
Kristin McKay, Executive Director, Project Alive -
John Mckew, CSO, Lumos Pharma
Jennifer McNary, Founder, One Rare
Stuart Mealing, Associate Director (HEOR), York Health Economics Consortium
Sheila Mikhail, Executive Director, Columbus Children's Foundation
Nicole Miller, Vice President, Molecular Diagnostics, Global Medical Affairs, Ultragenyx
Mona Moonis, North America Brand Lead, Rare Diseases, Kyowa Kirin
Alexander Natz, Director General, EUCOPE - European Confederation of Pharmaceutical Entrepreneurs
Adora Ndu, Chief Regulatory and interim Legal Officer, BridgeBio Gene Therapy
Kinnari Patel, President & COO, Rocket Pharma
Melissa Penn, Director Patient Engagement Research & Development, Bayer
Steven Peskin, President and Chief Executive Officer, Formerly Executive Medical Director Population Health at Horizon Blue Cross Blue Shield o, SRP Advisors, LLC
Christopher Porter, Vice President, Government Affairs and Policy, Travere Therapeutics
Stuart Portman, Health Policy Advisor, United States Senate Committee On Finance
Joshua Prabhakar, Vice President, novartis gene therapies
Harpreet Ram, Senior Advisor and Subject Matter Expert, GARDaccess,, Partnership for Quality Medical Donations (PQMD)
Debra Regier, Director, Rare Disease Institute, Children's National Hospital
Derek Robertson, President, Maryland Sickle Cell Disease Association
Matt Salo, Former Executive Director, National Association of Medicaid Directors (NAMD), Founder and Chief Executive Officer, Salo Health Strategies
Peter Saltonstall, Chief Executive Officer, National Organization for Rare Disorders (NORD)
Albert Seymour, President & Chief Executive Officer, Homology Medicines
Christy Shafer, Chief Commercial Officer, Marinus Pharmaceuticals
Conor Sheehey, Senior Health Policy Advisor, United States Senate
Regan Sherman, Director of Patient Advocacy, Entrada Therapeutics
Tricha Shivas, Chief Strategy Officer, Foundation for Sarcoidosis Research
John Sholar, Chief Executive Officer, jCyte Inc
Kim Stephens, Executive Director, Muenzer MPS Research & Treatment Center
Dean Suhr, President, MLD Foundation
Jamie Sullivan, Director of Public Policy, EveryLife Foundation for Rare Diseases
Marshall Summar, Director, Rare Disease Institute, Children's National Medical Center
Julia Taravella, Exececutive Director, Rare Trait Hope Fund
Jason Tardio, Chief Operating Officer, Ovid Therapeutics
Mitra Tavakkoli, Vice President; Clinical Development, 4DMT
Ulrich Thienel, Chief Executive Officer, ReAlta Life Sciences
Mark Trusheim, Strategic Director NEWDIGS, Center for Biomedical System Design, Tufts Medical Center
Andrew Udell, President of North America, Commercial, Calliditas Therapeutics
Robert-Jan Van Son, General Manager Germany, BeNeLux and Nordic,, Orphalan
Geeta Vemuri, Managing Partner, Agent Capital
Daniel Wainstock, Researcher and Rare Disease Advocate, PUC-Rio
Mary Wang, Programme Director, Rare Diseases International
Kristin Viswanathan Wolff, Senior Director, Global Government Affairs And Public Policy, bluebird bio
Durhane Wong-Rieger, President, Chief Executive Officer & Chair, Canadian Organisation for Rare Diseases & Rare Diseases International
Justin Yang, Co-Founder, Kaibab Health & DMV Bio
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