Nicole founded RARE-X in December 2019, a patient advocacy health tech 501c3. RARE-X exists to support patients and disease communities in becoming the most viable partners in advancing research in their disease area. RARE-X is currently supporting 68 disease communities and working with several biopharma partners since mid-2021. RARE-X’s unique approach and commitment to patient engagement support also lends itself to enabling undiagnosed patients, Nof1 – NofSmall patient communities and disease consortia.
RARE-X originated from the work and insights that came from Nicole’s role as CEO and founder of Global Genes. Since its inception, Global Genes has impacted hundreds of thousands of patients worldwide, has engaged with over 700 rare disease patient advocacy organizations in over 25 countries, and has partnered with over 100+ biopharma partners and academic research institutions.
Nicole has worked with world-class organizations in media, pharmaceuticals, venture and the high-tech sector. Nicole is a trusted rare disease leader, a passionate creator, collaborator and entrepreneur, and has dedicated her later career in support of rare disease patients globally.
Nicole serves as a founding board member of the ARM Foundation for Cell and Gene Medicine, the KIF1A Patient Organization, and serves in an advisory capacity for several biotech and patient advocacy organizations.
Nicole holds her BS in Political Science from the University of California San Diego. She is a proud wife and mother of two amazing adult children.
