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Investment in global federated data systems could unlock data about rare diseases and advance the
When RARE-X first sought to recruit Megan O’Boyle as patient engagement lead for the nonprofit,
The need to reframe our approach and response to rare disease is urgent. Approximately 10% of the
FasterCures, alongside other patient-focused advocacy organizations, has long worked with
A Group of patient organizations, academic researchers, and other rare disease stakeholders today