Charlene Son Rigby | CEO
Global Genes
Charlene Son Rigby is the Chief Executive Officer of Global Genes. She has spent her career building organizations at the intersection of data, technology, and life sciences. Charlene was previously Chief Business Officer at Fabric Genomics and held executive roles at enterprise software and genomics companies, including Oracle and Doubletwist. She started her career in neuroscience research at Roche. When Charlene’s daughter was diagnosed with a rare genetic disease, she co-founded the STXBP1 Foundation. She is committed to finding a cure for her daughter’s disorder. Charlene’s unplanned connection between her personal life and profession has helped push forward the search for a cure for her daughter and kids like her, and given her work deeper meaning. She holds a B.A. in Human Biology from Stanford University and an M.B.A. from the Haas School of Business at U.C. Berkeley.
Appearances:
Day 2 - World Orphan Drug Congress USA 2026 @ 09:10
Next Gen CEO’s Driving Innovation and Transforming the Future of Therapy Development
This keynote session will feature a conversation with leading biotechs changing the rare disease space. We will delve into the leadership and innovation, as well as patient-centered strategies necessary to succeed in today's environment. These CEOs are defining the future of rare disease and therapeutic advancement
Day 2 - World Orphan Drug Congress USA 2026 @ 09:50
Value in Rare Disease: A Global View of Trials, Endpoints, and Access in 2026
Technologies and medicines are evolving at a rapid pace, transforming patients’ health outcomes, lives, caregivers’ lives, societies, and economies. Medicines development, especially in the rare disease environment, is dynamic in terms of clinical trial designs, and new surrogate, novel and disease relevant endpoints. The change is being handled differently by patients, regulators and payers.
This panel will explore the changing technology landscape for medicines in rare disease, the impact on health outcomes, and discuss why this requires updated approaches to clinical trial designs, including new evidence and endpoints. It will also explore how payers and Health Technology Assessment (HTA) agencies can consider the value of improved health outcomes when innovative therapeutics are accessible and how to adapt to meet the rare disease evolution in their value assessments and access decisions.
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