Hope Beyond Rarity – Charlene Son Rigby

In this inspiring episode of SpreadLove in Organizations, in partnership with the Termeer Institute, host Naji Gehchan welcomes Charlene Son Rigby, CEO of Global Genes, who shares the deeply personal journey that brought her into the rare disease space. After years of searching for a diagnosis, her daughter was found to have STXBP1, a rare neurodevelopmental disorder. That life-altering moment led Charlene to co-found the STXBP1 Foundation, driven by the urgent need to accelerate research and give families like hers a path toward hope. Her story bridges science, advocacy, and parenthood—reshaping her career and purpose.

Charlene discusses how this experience led her from the tech and genomics industry to nonprofit leadership, first with RareX and now with Global Genes. She highlights the organization’s mission: to empower rare disease communities through support, education, and research. Recognizing that much of early progress in rare diseases now begins with patients themselves, Charlene explains the rise of the “next-generation advocate”—families who build data, mobilize researchers, and initiate therapeutic development even in ultra-rare conditions. The merger of RareX and Global Genes was designed to strengthen this ecosystem and give advocates the tools they need to drive discovery.

Looking ahead, Charlene is optimistic about the future of therapeutic development, especially as genetic tools and platform approaches open the door to faster, more scalable progress. Yet challenges remain - particularly the economic and regulatory barriers that hinder early-stage rare disease research. She calls for continued collaboration, smarter infrastructure, and systems designed to make innovation accessible to even the smallest patient communities. Above all, Charlene emphasizes leadership rooted in clarity, conviction, and hope - standing tall in what matters as we work toward cures for all.

"Really focusing on what matters, and standing tall in that, is so important."

MEET OUR GUESTS Charlene Son Rigby, CEO of Global Genes.

Charlene Son Rigby is Chief Executive Officer of Global Genes. Charlene has spent her career building organizations at the intersection of data, technology, and life sciences. Charlene led the merger between Global Genes and RARE-X, a health technology nonprofit. She 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. Charlene is a Termeer Scholar. 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.

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