The RARE-X Difference

RARE-X understands that the road to accelerating disease diagnosis, drug development, and driving down costs will take a new approach. That is why like-minded individuals and organizations are coming together to support the development of RARE-X. The needs and challenges are great, and the road ahead is hard, but nothing worth doing is ever easy.

The primary challenge influencing the speed and productivity of innovation in rare disease is cost and the lack of reliable or open access to comprehensive patient data.

This is because…

The data exists, but is captive within a silo, 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.).

The future successes in rare disease will stem from collaborations between patients, researchers, and biopharma partners. In order to meet the growing needs for these types of interactions and partnerships RARE-X is building;

• The largest data collection and federated data sharing and analysis platform in rare disease.
• A technology platform that supports the rare disease ecosystem, from diagnosis, to discovery and development, to long-term outcome tracking
• An enabling platform supporting global collaboration
• Patient owned and stewarded data collection; patients will input, control and direct who can access their data, and for what purposes, at all times.
• A not-for-profit model, that levels the playing field to access for all researchers and patient groups.
• A platform for Collaboration not Competition