RARE-X is a 501(c)(3) rare disease technology nonprofit focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by a rare disease. RARE-X is building the largest collaborative patient-driven, open-data access project for rare diseases globally. The RARE-X collaborative data platform provides a means for patient organizations to share patient data, natural history studies, genomic information, electronic health records, and other data with researchers, clinicians, and drug developers broadly and with the appropriate governance. This technology platform and novel support service layer will be provided free of charge to patients and patient organizations to ensure that they can gather the right data, and share it without many of the burdens that impact patient’s desire to participate.
In addition to patient-owned data collection efforts, RARE-X is bringing forward a federated data-sharing platform that will support a data library for rare disease, interconnecting data from various sources that until now have been siloed. Creating a vibrant ecosystem of open rare disease data will accelerate discovery providing opportunities for querying across disease, disease categories, phenotypes, etc, transforming biomedical research.