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.

Xplore RARE-X
Categories
Xplore Recent Posts
- RARE-X on Rare Disease Day 2021 February 26, 2021
- Frost Brings Operational Expertise to RARE-X Board as Organization Scales up February 23, 2021
- RARE-X Announces Patient Community Data Collection, Sharing, and Platform Enhancements February 23, 2021
- Health Technology Expert and Rare Disease Patient Jason Colquitt Strengthens RARE-X Board February 18, 2021
- Grossman Brings a Diverse Perspective to the RARE-X Board February 16, 2021
Accelerating Treatments for Rare Disease through Data Sharing – Podcast
Share on facebook
Share on Facebook
Share on twitter
Share on Twitter
Share on linkedin
Share on LinkedIn
Share on email
Share via Email