Speaker Profile
MBA, President & Co-Founder, STXBP1 Foundation
Biography
Charlene Son Rigby 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 Charlenes daughter was diagnosed with a rare genetic disease, she cofounded the STXBP1 Foundation. Charlene is also CEO of Global Genes, a onprofit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. She is committed to finding a cure for her daughters disorder. Charlenes 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.
Session Abstract – PMWC 2024 Silicon Valley
Track Co-Chairs:
Yael Weiss, Mahzi Tx
Peter Marks, FDA
- PMWC 2024 CGT Award Ceremony
Pioneer Honoree: Katherine A. High, AskBio
Pioneer Honoree: Timothy Yu, Boston Children's Hospital
- Piloting Interventional Genomics for Orphan Diseases
Keynote: Timothy Yu, Boston Children's Hospital
- Accelerated Approval for Small Populations: Biomarkers & Endpoints (PANEL)
Chair: Peter Marks, FDA
- Jennifer Puck, UCSF
- Katherine A. High, Rockefeller University
- Timothy Yu, Boston Children's Hospital - Novel Clinical Design Approaches in Rare Diseases (PANEL)
Chair: Adam Shaywitz, Bridge Bio
- Salvador Rico, Encoded Therapeutics
- Eric Crombez, Ultragenyx
- Elizabeth Berri Kravis, Rush University
- Empowering Patient Advocacy in Rare Disease Therapies (PANEL)
Chair: Yael Weiss, Mahzi Tx
- Charlene Son Rigby, STXBP1 Foundation
- Michael Graglia, Syngap Research Fund - Advancing the Frontier: Gene and Cell Therapies for Rare Diseases (PANEL)
Chair: Matthew Porteus, Stanford
- Swati Tole, Capsida Biotherapeutics
- Adrian Veres, Dyno Therapeutics
- Thomas Wechsler, J&J
- David Lebwohl, Intellia Therapeutics
- Pooja Agarwal, BioMarin Pharmaceutical
