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