A strong data program is one of the most valuable assets a rare disease organization can possess. It provides a solid foundation for strategy development and decision making. It makes your organization attractive to funders, investors, and research partners. It can even reveal new solutions to seemingly unsolvable problems.
This module assembles stories of advocacy leaders who’ve used data-centric strategies to create new paradigms, breakthrough barriers and achieve remarkable progress – often in surprising ways.
David 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 AllianceRobyn 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
