Prader-Willi Syndrome (PWS): For Researchers and Health Care Providers

• Genetics Home Reference includes a Prader-Willi Syndrome page with an overview, useful links, and a glossary of terms.
• Angelman, Rett & Prader-Willi Syndromes Consortium provides information on diagnosis, treatment, clinical trials, and patient registries for these three syndromes.
• Rare Diseases Clinical Research Network provides information for patients and health professionals on how to join the patient registry and participate in clinical research.
• The Prader-Willi Syndrome Association (USA) sponsors research on topics related to Prader-Willi syndrome, including obesity, behavioral interventions, and respiratory symptoms, plus basic research relevant to Prader-Willi syndrome.
• The Foundation for Prader-Willi Research supports research aimed at eliminating the challenges of Prader-Willi syndrome, particularly research on the shift from failure to thrive to excessive hunger, gene reactivation, and the cellular phenotypes of Prader-Willi syndrome.
• NIH Strategic Plan for Obesity Research (PDF - 716 KB) provides a detailed review of the full range of research supported by the NIH on obesity. It addresses all areas of research, including basic science research, prevention, and treatment. It also addresses strategies for dissemination of research findings.
• NICHD's Intellectual & Developmental Disabilities Branch (IDDB) supports extramural research on a variety of IDDs, including Prader-Willi syndrome.
• NICHD IDD Branch Council Report (PDF - 1.01MB) describes the scope of work supported by the IDD Branch, including support for training; support for centers for research into intellectual and developmental disabilities; integration of research, training, and support; and collaborations with federal agencies, organizations, advocacy groups, and community partners. (As a result of a reorganization in 2012, the current name of this organizational unit is the IDDB.)​
• The NICHD’s IDDB supports the Angelman, Rett & Prader-Willi Syndromes Consortium as part of its efforts to understand PWS and related conditions.
• NICHD's intramural Unit on Metabolism and Neuroendocrinology researches the endocrinological characteristics of the food behaviors and metabolic symptoms of Prader-Willi syndrome.
• NICHD's intramural Section on Growth and Obesity studies the metabolic and behavioral factors in body weight regulation and body composition during childhood.
• 2012 Workshop on Rare Syndromic Body Fat Disorders, sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases, addressed rare disorders in which obesity is a common feature. Participants also discussed the study of families with disorders, including Prader-Willi syndrome; research into etiology and treatment; and areas of ongoing research.

Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, NIH, or HHS.​​