RARE-X_2021_Overview_v4_Feb_pts (1)_Page
RARE-X_2021_Overview_v4_Feb_pts (1)_Page


Through RARE-X we hope to affect positive change in the cost and the lack of access to reliable and comprehensive patient data that are critical factors influencing the speed and productivity of innovation:

  • The data exists, but is captive within silos, institutional or company owned, because of institutional / technological constraints, or is being held for exclusive commercial purpose

  • The data may exist, but not in a structure/form where it is available, visible or useful to researchers or patient communities.

  • The data doesn’t yet exist (because patients can’t access genomic or other testing, there is not a way to effectively collect patient-reported information, etc.).​


RARE-X was founded on these core principles:

  • Patients’ data is critical to rare disease innovation — but does little to help advance progress if it is not widely accessible for research

  • Researchers need access to more and better data to transform rare disease drug development. Providing a way to silo-break these data sets is essential to progress.

  • Rare patient communities want their data shared, securely but openly — where it can drive better, faster progress

  • Meaningful, equitable advancement in rare disease innovation requires global collaboration and sharing of data

  • If patients are empowered as data stewards, it benefits all involved in rare disease diagnosis, research, discovery, drug development and treatment

  • Patients’ data should only be shared with their consent and for their primary benefit

RARE-X_2021_Overview_v4_Feb_pts (1)_Page

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.

RARE-X_2021_Overview_v4_Feb_pts (1)_Page
RARE-X_2021_Overview_v4_Feb_pts (1)_Page
RARE-X_2021_Overview_v4_Feb_pts (1)_Page
RARE-X_2021_Overview_v4_Feb_pts (1)_Page
RARE-X_2021_Overview_v4_Feb_pts (1)_Page