RARE-X expands its leadership team to support the organization’s rapid growth.
Aliso Viejo, CA —July 27, 2021 — RARE-X announced today that Charlene Son Rigby has been appointed CEO of the rare disease technology nonprofit. An experienced business leader, Charlene Son Rigby will oversee the strategic growth of RARE-X, as well as day-to-day management.
Nicole Boice, RARE-X’s founder and current Executive Director, will shift her role to Chief Engagement Officer, focusing on partnerships with biopharma, researchers, and patient organizations, with an emphasis on development.
RARE-X is a nonprofit organization dedicated to 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.
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 to RARE-X. 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.
“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, Ph.D., 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. I am thrilled to announce that Charlene will bring her vision and expertise to RARE-X.”
“After a rigorous search, we found Charlene who has a deep understanding of Technology, Startups, Genomics, and Patient Advocacy,” said Nicole Boice, founder of RARE-X. “In addition, Charlene is a team builder. She understands how to grow an organization, and will be operationalizing the critical mission, vision and goals that the launch team has brought forward. We are thrilled to have Charlene join the team, and the organization and the rare disease community will benefit from her knowledge, expertise, and commitment to patients.”
“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.”
RARE-X is a 501(c)(3) rare disease technology nonprofit focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by a rare disease. Enabled by best-in-class technology, patients, researchers, and other technology vendors, RARE-X will gather structured, fit-for-purpose data to share broadly, benefitting from 21st-century governance, consent, and federated data-sharing technology. RARE-X is building the largest collaborative patient-driven, open-data access project for rare diseases globally. For more information, visit www.rare-x.org.
Tom Hume, Marketing Communications – RARE-X