Search

Joined in March 2021

About Us

We believe that rare patient communities, equipped to securely gather and share their data with collaborating researchers and companies around the globe, will significantly expand diversity and inclusion in research and dramatically accelerate progress across rare diseases.

Our Vision

RARE-X believes that by enabling rare patient communities to more easily gather, structure and securely share critical data, through a common platform, in collaboration with researchers, drug developers and clinicians anywhere in the world, we will accelerate diagnosis, disease understanding, and development of future treatments and cures across more than 8,000 rare diseases.

RARE-X is…

RARE-X is a 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.

We believe that rare patient communities, equipped to securely gather and share their data with collaborating researchers and companies around the globe, will significantly expand diversity and inclusion in research and dramatically…

Issue Areas Include

  • Education
  • Health & Medicine

Location & Contact

  • mail
    info@rare-x.org
  • 26895 Aliso Creek Rd, Aliso Viejo, CA 92656, USA
    Suite B-246

Join Idealist

Sign up today to save your favorite organizations and get email alerts when new ones are posted.