Links to websites of groups that study or provide information about Prader-Willi Syndrome.
- The Foundation for Prader-Willi Research
The foundation sponsors research to eliminate the challenges of PWS. Its website includes several resources for families of people with the syndrome. - MedlinePlus: Prader-Willi Syndrome
This website, from the National Library of Medicine at NIH, offers information and links to additional details and services related to PWS. - Prader-Willi Syndrome Association (USA)
This association is a leading patient advocacy group, providing support to individuals with PWS and their families. - Rare Diseases Clinical Research Network for Angelman, Rett & Prader-Willi Syndromes Consortium
The consortium brings together researchers, patients, and scientists to further research into these three syndromes. - Global PWS Registry
The Foundation for PW Research maintains this registry to learn about PWS from individuals and families living with the condition.
Please note: Links to organizations and information included on this page do not indicate endorsement from NICHD, NIH, or HHS.
NICHD Research
- NICHD's Intellectual and Developmental Disabilities Branch (IDDB) supports extramural research on a variety of intellectual and developmental disabilities, including PWS.
- NICHD IDDB Council Report (PDF 1.01 MB) describes the scope of work supported by the 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.
- The IDDB also supports the Angelman, Rett, and Prader-Willi Syndromes Consortium as part of its efforts to understand PWS and related conditions. The consortium is part of the Rare Diseases Clinical Research Network , which provides information for health and research professionals about ongoing clinical research.
- NICHD's intramural Unit on Metabolism and Neuroendocrinology researches the endocrinological characteristics of the food behaviors and metabolic symptoms of PWS.
- NICHD's intramural Section on Growth and Obesity studies the metabolic and behavioral factors in body weight regulation and body composition during childhood.
NIH Resources
- The Genetics Home Reference includes a PWS page with links to published reviews, clinical trials, and information about related genes.
- The Strategic Plan for NIH Obesity Research (PDF 627 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.
- The 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 PWS; research into etiology and treatment; and areas of ongoing research.
Other Organizations
- The Prader-Willi Syndrome Association (USA)
The association sponsors research on topics related to PWS, including obesity, behavioral interventions, and respiratory symptoms, plus basic research relevant to PWS. - The Foundation for Prader-Willi Research
The foundation supports research aimed at eliminating the challenges of PWS, particularly research on the shift from failure to thrive to excessive hunger, gene reactivation, and the cellular phenotypes of PWS.
Please note: Links to organizations and information included on this page do not indicate endorsement from NICHD, NIH, or HHS.
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