Betsy Bogard

Part of Global Genes, Rare-X is a patient advocacy organization based in Washington. Rare-X is focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by a rare disease. Rare-X is building the largest collaborative patient-driven, open-data access project for rare diseases ly, gathering structured, fit-for-purpose data to share broadly, benefitting from 21st-century governance, consent, and federated data sharing technology. Rare-X's goal is to build the largest collaborative patient-driven, open-data access project for rare diseases ly. The American company was founded in 2019 by Nicole Boice. The CEO is Charlene Son Rigby. Rare-X was acquired by Global Genes on February 07, 2023.