Foundation for Prader-Willi Research and NORD Launch Global Registry



To accelerate research and better understanding of Prader-Willi syndrome (PWS), NORD and the Foundation for Prader-Willi Research have established a Global Prader-Willi Syndrome Registry. This new resource creates a platform for patients around the world to share information with researchers on developmental history, medical complications, and quality of life for individuals living with PWS. The registry is the second to be launched on a platform developed by NORD to serve rare disease patients, researchers, and medical experts by facilitating the global collection of rare disease data and experiences. NORD’s registry platform has been cited by Janet Woodcock, MD, Director of FDA’s Center for Drug Evaluation and Research, as an example of how patient organizations can contribute significantly toward better understanding of rare diseases and the development of treatments.

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