Accelerating Cures for Rare Diseases Through Digital Technology

Reimagining the ecosystem and technological infrastructure for developing treatments and cures for rare diseases

There are almost 7,000 rare diseases, which affect millions of patients. Currently, there are treatments for only about 5% of these diseases. Barriers inhibiting the development of treatments and cures include lack of alignment among all stakeholders, lack of an adequate technological infrastructure, lack of adequate data and data interoperability, and dated regulatory and reimbursement frameworks.

The Rare Disease Advisory Committee convened by InformaConnect and OpenText sees a better way. This group envisions an easy-to-use online platform that contains comprehensive longitudinal health data about patients. Turning this vision from a concept into a tangible reality requires a scalable, connected, technological backbone and infrastructure.