PATIENTS' DATA POWERING PROGRESS - RARE-X is expected to become the largest data-sharing initiative focused on rare diseases. More to come............. PATIENTS' DATA POWERING PROGRESS. RARE-X is expected to become the largest data-sharing initiative focused on rare diseases. As a grant-supported nonprofit, RARE-X was created to support the acceleration of disease understanding. Follow us here. RARE-X is a 501(c)(3) non-profit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.We are piloting a series of demonstration projects, partnering with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support the global needs of those developing treatments and caring for rare disease patients. Also, we are leveraging existing technology powered by the Broad Institute of MIT and Harvard, which will support patients (in data collection, structuring and responsible sharing), clinicians (in accelerating diagnosis and improving and tracking health outcomes), researchers and biopharma (with the data they need to identify, develop and track the impact of breakthrough treatments and cures).Additionally, we are adapting proven technologies and partnering with leading experts to create a federated data analysis platform, specifically designed by rare community leaders and