Prader-Willi Syndrome (PWS): For Patients and Consumers

Services, Resources, and Support

• 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, including:
  • A fact sheet for parents of children who were recently diagnosed with Prader-Willi syndrome, called "My child just got diagnosed with PWS…now what?" that provides basic information and useful links relevant to Prader-Willi syndrome.
  • The stories of families of people with Prader-Willi syndrome , which highlight how different families have reacted to their child's diagnosis and live with the disorder.
• Genetics Home Reference
  This NIH website includes a PWS page with an overview and glossary of terms, as well as links to patient support organizations.
• 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.
• Rare Diseases Clinical Research Network Patient Registry
  This registry is a database where people with rare genetic diseases can register to be contacted about clinical trials and to be given updates on the progress of research projects.

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