Rare Daily Staff

The nonprofit rare disease data platform RARE-X named rare disease patient advocate and bioinformatics executive Charlene Son Rigby as its CEO.

Son Rigby will oversee the strategic growth of RARE-X, as well as day-to-day management of RARE-X. She replaces Nicole Boice, RARE-X’s founder and current executive director, who will become chief engagement officer and focus on forging partnerships with biopharmaceutical companies, researchers, and patient organizations, with an emphasis on development.

“Charlene is a champion for rare disease patients and an industry leader who appreciates the importance of RARE-X to patients, researchers, and drug developers,” said Walt Kowtoniuk, venture partner with Third Rock Ventures, and chairman of the board for RARE-X. “As we entered 2021, we knew it would be a big year for RARE-X. So, in parallel to building the Data Collection Platform, we sought to bolster the RARE-X leadership team to scale the organization to support the ever-growing rare disease patient and community population.”

Son Rigby brings a wealth of expertise to this role, having spent her career building organizations at the intersection of data, technology, and life sciences. She previously served as chief business officer at Fabric Genomics, developer of an AI-based platform for the analysis and interpretation of next-generation sequencing data. She also held executive roles at enterprise software and genomics companies, including Oracle and Doubletwist. Son Rigby 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.

She has a deep understanding of the needs of rare disease organizations. After her daughter was diagnosed with a rare genetic disease, Son Rigby co-founded the STXBP1 Foundation. The connection between her personal life and profession has helped push forward the search for a cure for her daughter and kids like her, while giving her work a deeper meaning.

RARE-X is enabling patient communities to easily collect, manage, connect, and share their de-identified data securely. In July, the organization launched the first of its pilot projects across 11 rare diseases. The organization is on track to reach its goal of supporting more than 100 disease communities that will represent more than 100,000 patients within the next 24 months.

“I joined RARE-X because I strongly believe a platform approach which incorporates federated data is crucial to transforming and accelerating therapy development across rare diseases,” said Son Rigby. “Nicole has done an extraordinary job building two rare disease organizations that have changed the landscape for rare disease — Global Genes and now RARE-X. I look forward to helping RARE-X reach the next level of growth and impact and realize its important vision.”

Photo: Charlene Son Rigby, newly named CEO of RARE-X

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