People with rare diseases who have engaged with researchers to find a diagnosis or treatment for

Chris Austin describes the National Center for Advancing Translational Sciences, the National

About six months after Christina Hartman’s daughter Charlotte was born, the infant began missing

Anthony Philippakis is a physician, geneticist, and data scientist. He is currently a cardiologist

A global pandemic by its very nature would seem to be the antithesis of a rare disease, but the

It was at a hotel in Newport Beach, California in 2016 that members of the patient advocacy

A quick video overview of RARE-X and how it is using Federated Data to help patients and

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