Scott Demarest, MDAssistant Professor Dept. of Pediatrics and Neurology CU School of Medicine & Children’s Hospital Colorado Liz Horn, PhD, MBI Principal LHC Biosolutions Megan O’BoylePrincipal Investigator International Registry & Data Network Phelan- McDermid Syndrome Foundation Ethan Perlstein, PhDCEO Perlara PBCSteven Roberds, PhD CSO Tuberous Sclerosis Alliance Kari Rosbeck CEOTuberous Sclerosis Alliance Luke Rosen Founder KIF1A.OrgShelley BowenCo-founder Barth Syndrome FoundationMegan DoerrPrincipal Scientist, Sage BionetworksSonya Dumanis, PhDSenior Director of Innovation Epilepsy FoundationLiz HornPrincipal LHC BiosolutionsEric Camino, PhDDirector, Research & Clinical Innovation Parent Project Muscular DystrophyEmily MilliganExecutive Director Barth Syndrome FoundationRyan FischerSenior Vice President, Community Engagement Parent Project Muscular DystrophySteve Roberds, PhDChief Scientific Officer Tuberous Sclerosis AllianceMatthew J. Toth,PhDScience Director Barth Syndrome Foundation Meagan Cross FASTAustralia Chairperson, Project Manager, and International Liaison Global Angelman Syndrome RegistryAllyson BerentChief Science Officer Foundation for Angelman Syndrome TherapeuticsKristin SmedleyChief Executive Officer Curing Retinal Blindness FoundationMileva Repasky, MSChief Patient & Development Officer Castleman Disease Collaborative NetworkMary Zuccato, MBAChief 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, MHAProgram Officer, National Center for Advancing Translational Sciences National Institutes of HealthDavid Fajgenbaum,MD, MBA, Sc, FCPPCo-founder & Executive Director Castleman Disease Collaborative NetworkF. Bradley Johnson,MD, PhDProfessor of Pathology and Laboratory Medicine University of Pennsylvania Perelman School of MedicineBenjamin Prosser, PhDAssistant Professor of Physiology University of Pennsylvania Perelman School of Medicine Edwin Weeber, PhDFormer Professor of Molecular Pharmacology and Physiology University of South FloridaLiz Horn, PhD, MBIPrincipal LHC BiosolutionsPaula Evans Board Chair Foundation for Angelman Syndrome Therapeutics (FAST) Chief Executive Officer, GeneTxDavid Spencer, PhDVice-Chairman of the Board BioPontis Alliance for Rare DiseasesMichael Hund, MBAChief Executive Officer EB Research PartnershipRyan FischerSenior Vice-President, Community Engagement Parent Project Muscular DystrophyEric Camino, PhDDirector, Research and Clinical Innovation Parent Project Muscular DystrophyKristin SchneemanDirector FasterCuresLara Pullen, PhDCo-founder and Director Chion Foundation Maria PiconeCo-founder and CEO TREND CommunityLinda WadePresident & CEO Sickle Cell Association of Texas, Marc Thomas FoundationJordan ShumwaySocial Worker Sickle Cell Association of Texas, Marc ThomasKhrystal K. Davis, JDFounder Texas Rare Alliance Robyn Correll Carlyle, MPH, CHWI Dia de la Mujer Latina, Inc.Paige NuesDirector Rettsyndrome.org Dan Glaze, MD MDProfessor Baylor College of Medicine, TexasBernhard Suter, MDAssistant Professor Baylor College of Medicine, Texas