Rare disease unites patients and families across borders. The goals to accelerate research to understand rare diseases; ensure patients receive accurate, rapid diagnoses; identify and support best standards for clinical care; and support efforts to develop effective therapies and cures are universal. Hear from global advocacy leaders about ambitious, innovative projects aimed at achieving all of these goals including the International Rare Disease Research Consortium (IRDiRC), The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease and Global Alliance for Genomics and Health.
Speaker: Anthony Philippakis, MD, PhD, Chief Data Officer and Institute Scientist, Broad Institute of MIT and Harvard
Speaker: Steve Groft, Senior Advisor to Director, National Center for Advancing Translational Sciences (NCATS), NIH
Speaker: Clifford Goldsmith, MD, Managing Director for US Providers, Microsoft
Speaker: Barbara Wuebbels, MS, RN, Chairman, Professional Patient Advocates in Life Sciences
Speaker: Frank Sasinowski, MS, MPH, JD, Director, Hyman, Phelps & McNamara, PC
Speaker: Robin Smith, MBA, MD, President and Chairman of the Board, Cura Foundation