Global Genes Employee Directory

Non-profit OrganizationsDistrict of Columbia, United States11-50 Employees

Global Genes is a nonprofit organization based in Washington, DC, focused on rare disease advocacy and patient support. The organization formed from a December 2022 merger with RARE-X, unifying efforts to empower the next generation of rare-disease advocates. Through its initiatives and services, it helps patients, families, and care partners access tools and participate in research, drawing on the RARE-X data platform and related support structures.

Its primary audience includes patients, families, advocacy groups, and healthcare partners seeking to improve care and advance research for rare conditions. It addresses long-standing gaps in access to tools, technology, and infrastructure that can enable advocacy, data collection, and collaboration. In September 2024, Global Genes launched the RARE Navigator Program as part of its RARE Concierge Patient Services, illustrating continued expansion of direct support for newly diagnosed patients and their families.

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