RARE-X (formerly The RARE Project)
RARE-X is a 501(c)(3) non-profit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.
RARE- X is 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.
RARE-X is 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).
RARE-X is adapting proven technologies and partnering with leading experts to create a federated data analysis platform, specifically designed by rare community leaders and scaled to support the diverse and expanding needs of rare disease research, development and care, around the world and in all communities.