Making Rare Diseases Count 2026

Neil McAuslane Scientific Director, Centre for Innovation in Regulatory Science Bola Owolabi Chief Inspector of Primary Care and Community Services, Care Quality Commission David Pearce Chair, International Rare Disease Research Consortium David Rabinowitz US Principal, Deloitte Karen Reid Executive Director, Medical Education and Business Strategy, WebMD/Medscape S. Christy Rohani-Montez Senior Director of Clinical Strategy and Rare Disease Education Lead, Medscape Stacey Seeloff Director, Strategic Initiatives, Rady Children’s Institute for Genomic Medicine Catherine Lynn T. Silao Head of the Molecular Genetics Unit, Institute of Human Genetics, HGP2 Working Group Lead, National Institutes of Health, Philippines Karen Skinner Chief Operating Officer, LifeArcAnna Somuyiwa Executive Director, Centre for Innovation in Regulatory Science Kaila Stevens Program Lead (Non-Clinical), Rare Care Centre, University of Western Australia Thong Meow-Keong    Consultant Clinical Geneticist, HGP2 Working Group Lead, University of Malaya Durhane Wong-Rieger President and Chief Executive Officer, Canadian Organization for Rare Disorders Shivam Zalke C4IR Program Manager, Telangana Life Sciences Shida Zhu Vice-President of Research & Development, BGI Genomics Production Simon Smith Editor, Astra Content Albert Badia Designer, Theory.Studio Joan Montes Designer, Theory.Studio Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity 31