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    Charlene Son Rigby

    Healthcare Entrepreneur | Rare Disease Advocate | Board Member

    Charlene Son Rigby is the CEO of Global Genes, a rare disease advocacy organization.1 She has spent her career building organizations at the intersection of data, technology, and life sciences.13 Prior to her role at Global Genes, Son Rigby served as the CEO of RARE-X, a nonprofit focused on accelerating rare disease research through data sharing.2

    Son Rigby's journey in the rare disease world began with a personal experience. Her daughter, Juno, was diagnosed with a rare neurodevelopmental condition called STXBP1-related disorder after a three-year diagnostic journey.1 This led Son Rigby to co-found the STXBP1 Foundation and become deeply involved in rare disease advocacy.12

    Professional Background

    • CEO of Global Genes (current position)1
    • Former CEO of RARE-X2
    • Previously served as Chief Business Officer at Fabric Genomics2
    • Held executive roles at enterprise software and genomics companies, including Oracle and Doubletwist2

    Education

    • B.A. in Human Biology from Stanford University2
    • M.B.A. from the Haas School of Business at U.C. Berkeley2

    Achievements

    Son Rigby was named a Termeer Scholar by the Termeer Foundation in June 2024.3 This prestigious award recognizes leaders who are passionate about creating change for patients and translating early-stage ideas into real-world applications.3

    Advocacy Work

    As CEO of Global Genes, Son Rigby focuses on next-generation advocacy, which allows individuals to utilize tools and resources to accelerate advocacy efforts and support opportunities to drive research and therapy development.1 Her work spans various areas, including mental health support for rare disease families, promoting health equity, and enabling research readiness in the rare disease community.1

    Highlights

    Briefings - Rosalind Franklin Society
    Jan 4 · globalgenes.org
    Letter from Charlene Son Rigby, CEO to Kick Off 2024 - Global Genes
    Letter from Charlene Son Rigby, CEO to Kick Off 2024 - Global Genes
    Jul 27 · rare-x.org
    RARE-X Appoints Charlene Son Rigby as CEO

    Related Questions

    What inspired Charlene Son Rigby to transition into the rare disease advocacy field?
    How has Charlene Son Rigby's personal experience with her daughter's rare genetic disease influenced her professional journey?
    What are the main goals of Global Genes under Charlene Son Rigby's leadership?
    How does Charlene Son Rigby plan to address mental health challenges within the rare disease community?
    What initiatives has Charlene Son Rigby implemented to promote health equity in rare disease communities?
    Charlene Son Rigby
    Charlene Son Rigby, photo 1
    Charlene Son Rigby, photo 2
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    Location

    San Francisco, California, United States