Scott Demarest, MD Assistant Professor Dept. of Pediatrics and Neurology CU School of Medicine & Children’s Hospital Colorado Liz Horn, PhD, MBI Principal LHC Biosolutions Megan O’Boyle Principal Investigator International Registry & Data Network Phelan- McDermid Syndrome Foundation Ethan Perlstein, PhD CEO Perlara PBC Steven Roberds, PhD CSO Tuberous Sclerosis Alliance Kari Rosbeck CEO Tuberous Sclerosis Alliance Luke Rosen Founder KIF1A.Org Shelley Bowen Co-founder Barth Syndrome Foundation Megan Doerr Principal Scientist, Sage Bionetworks Sonya Dumanis, PhD Senior Director of Innovation Epilepsy Foundation Liz Horn Principal LHC Biosolutions Eric Camino, PhD Director, Research & Clinical Innovation Parent Project Muscular Dystrophy Emily Milligan Executive Director Barth Syndrome Foundation Ryan Fischer Senior Vice President, Community Engagement Parent Project Muscular Dystrophy Steve Roberds, PhD Chief Scientific Officer Tuberous Sclerosis Alliance Matthew J. Toth, PhD Science Director Barth Syndrome Foundation Meagan Cross FAST Australia Chairperson, Project Manager, and International Liaison Global Angelman Syndrome Registry Allyson Berent Chief Science Officer Foundation for Angelman Syndrome Therapeutics Kristin Smedley Chief Executive Officer Curing Retinal Blindness Foundation Mileva Repasky, MS Chief Patient & Development Officer Castleman Disease Collaborative Network Mary Zuccato, MBA Chief Operating Officer Castleman Disease Collaborative Network Stephen C. Groft, PharmD Senior Advisor to the Director, Office of the Director, National Center for Advancing Translational Sciences National Institutes of Health Eric Sid, MD, MHA Program Officer, National Center for Advancing Translational Sciences National Institutes of Health David Fajgenbaum, MD, MBA, Sc, FCPP Co-founder & Executive Director Castleman Disease Collaborative Network F. Bradley Johnson, MD, PhD Professor of Pathology and Laboratory Medicine University of Pennsylvania Perelman School of Medicine Benjamin Prosser, PhD Assistant Professor of Physiology University of Pennsylvania Perelman School of Medicine Edwin Weeber, PhD Former Professor of Molecular Pharmacology and Physiology University of South Florida Liz Horn, PhD, MBI Principal LHC Biosolutions Paula Evans Board Chair Foundation for Angelman Syndrome Therapeutics (FAST) Chief Executive Officer, GeneTx David Spencer, PhD Vice-Chairman of the Board BioPontis Alliance for Rare Diseases Michael Hund, MBA Chief Executive Officer EB Research Partnership Ryan Fischer Senior Vice-President, Community Engagement Parent Project Muscular Dystrophy Eric Camino, PhD Director, Research and Clinical Innovation Parent Project Muscular Dystrophy Kristin Schneeman Director FasterCures Lara Pullen, PhD Co-founder and Director Chion Foundation Maria Picone Co-founder and CEO TREND Community Linda Wade President & CEO Sickle Cell Association of Texas, Marc Thomas Foundation Jordan Shumway Social Worker Sickle Cell Association of Texas, Marc Thomas Khrystal K. Davis, JD Founder Texas Rare Alliance Robyn Correll Carlyle, MPH, CHWI Dia de la Mujer Latina, Inc. Paige Nues Director Rettsyndrome.org Dan Glaze, MD MD Professor Baylor College of Medicine, Texas Bernhard Suter, MD Assistant Professor Baylor College of Medicine, Texas