RARE-X Announces Patient Community Data Collection, Sharing, and Platform Enhancements with Support from Travere Therapeutics
On February 23, 2021, the nonprofit organization RARE-X announced plans to expand its work helping patient groups collect structured, standardized research-ready data that will better support the development of future treatments. This foundational work is made possible through a funding commitment from Travere Therapeutics.
RARE-X is a nonprofit organization dedicated to enabling patient communities to more easily, securely, and openly manage, aggregate, structure, and share their de-identified data on a common platform accessible to researchers and drug developers anywhere in the world. In addition, RARE-X and participating patient communities, including those who may not yet be diagnosed and N-of-1 patients, will have the ability to accelerate diagnosis, drug development, and access to treatments within and across rare diseases.