Charlene Son Rigby of Global Genes Recognized as a 2026 Fierce 50 Honoree

Recognition highlights Global Genes' work building the infrastructure that puts rare disease patient advocates at the center of drug development

WASHINGTON, Sept. 2, 2026 /PRNewswire/ -- Global Genes today announced that Charlene Son Rigby, its Chief Executive Officer, has been named a 2026 Fierce 50 honoree of Social Impact <https://www.fiercepharma.com/fierce-50/charlene-son-rigby> by Fierce Pharma, Fierce Biotech and Fierce Healthcare. The Fierce 50 recognizes 50 individuals and organizations driving advancements in medicine, fostering innovation and shaping the future of biopharma and healthcare.

"Now in its fourth year, the Fierce 50 continues to show that progress in this industry doesn't come from just one place," said Ayla Ellison, editor-in-chief of Fierce Life Sciences and Healthcare. "It's showing up in the lab, in executive leadership, in community clinics and in advocacy work that never makes headlines. Whether it's a biotech pushing a new therapy toward patients or a grassroots organization fighting for someone to get the care they need, these honorees remind us that impact takes a lot of different shapes. We're honored to celebrate all of them."

Son Rigby has spent her career at the intersection of science and systems — first in neuroscience research and bioinformatics, then in enterprise technology — before redirecting her expertise toward rare disease, where structural gaps between patients and researchers remain among the most consequential unsolved problems in medicine. Under her leadership, Global Genes has advanced its work as leading rare disease patient advocacy organization, equipping patient advocates driven by urgency, and helping them develop vital ecosystems to achieve critical progress.

RARE-X, Global Genes' Research Program, has enrolled more than 10,000 participants across 95+ rare diseases alongside 130+ patient advocacy organizations, with nearly 40 percent of participants located outside the United States. The Global Advocacy Alliance connects 890+ patient advocacy organizations with the leadership development, education, and peer networks. Through RARE Concierge, Global Genes provides direct navigation support to newly diagnosed patients and families.

Son Rigby also serves as President of the Board of the STXBP1 Foundation, which she co-founded after her daughter's diagnosis with STXBP1 syndrome.

"Rare disease research accelerates when patient advocates have real infrastructure and a seat at the table - not just goodwill but the training, tools, and connections to actually lead," said Son Rigby. "That's what we're committed to building at Global Genes. This recognition reflects the momentum of the 900 patient advocacy organizations in our alliance and the thousands of participants who have made RARE-X the resource it is. The work belongs to them."

Chosen by the editors of Fierce Pharma, Fierce Biotech and Fierce Healthcare, this year's Fierce 50 honorees reflect the breadth of talent and vision shaping the biopharma and healthcare industries today. From startups to established organizations, each has made a distinct contribution, whether by advancing scientific discovery, improving the health of communities, expanding access to care or reimagining how healthcare is delivered at a local level or on a global scale.

About Global Genes

Global Genes is a leading nonprofit organization working to advance the diagnosis, treatment, and quality of life for people living with rare diseases. Through RARE-X, its patient-led research platform, Global Genes enables research-quality data collection across 95+ rare diseases in partnership with advocacy organizations worldwide. Its Global Advocacy Alliance connects 900+ patient advocacy organizations with the resources, training, and community needed to drive rare disease progress. Programs including RARE Concierge, RAD Workshops, and the annual RARE Drug Development Symposium equip patients, caregivers, and advocates to be active partners in therapy development. For more information, visit globalgenes.org.

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SOURCE RARE-X