Rare Disease Data Repository

Are you a rare disease organization or researcher with valuable research study datasets or protocols to share? Let us help you to store, organize, and share your rare disease data, unlocking a world of possibilities for research and collaboration!

The Rare Disease Data Repository (RDDR) is an invaluable resource dedicated to the storage, organization, and dissemination of research data pertaining to rare diseases. Catering to researchers and rare disease organizations, the RDDR offers access to rare disease datasets that include natural history studies, clinical trial readiness studies, study findings, protocol documents, etc. Our goal is to accelerate the discovery of new treatments and enhance the understanding of rare diseases by providing a centralized platform for data sharing and collaboration. The RDDR is committed to maintaining the highest standards of data accuracy, privacy, and security, ensuring that all information is managed with the utmost care and integrity. By fostering a collaborative environment, we aim to empower the global rare disease community and drive advancements in diagnosis, treatment, and ultimately, cures.

If you are a rare disease organization or academic researcher, please click HERE to request an account. Once you're registered on RDDR, you may upload your research datasets or request access to datasets from research studies.