Accelerating Treatments for Rare Disease through Data Sharing

Patients’ data is critical to rare disease innovation, but it does little to advance progress if it is not widely accessible to the researcher. RARE-X is a nonprofit working to bust data silos through a federated data-sharing platform and empower rare disease patient communities to more easily gather, structure, and securely share critical data through a common platform.

Nicole Boice, co-founder and executive director of RARE-X, speaks about the problem RARE-X is seeking to address, the technology and expertise the organization has been able to bring together, and why data sharing is essential to accelerating the diagnosis of rare diseases and the development of new treatments to treat them. Daniel Levine hosts this RARECAST podcast.