We Are Stronger Together

PWSA (USA) is a community of families, professionals, and organizations committed to providing support and hope to those affected by Prader-Willi syndrome. Together, we are showing the world children and adults with PWS need not be defined by their diagnosis.

Family Support

PWSA (USA) supports individuals diagnosed with Prader-Willi syndrome, their families, and care providers with critical information and resources. We educate medical providers, educators, and professional care givers about PWS and how to best support individuals with the syndrome.

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Research

PWSA (USA) seeks to support research projects with the potential for immediate and high impact for the PWS community. The goal is to fast-track better treatment for the syndrome, and we proudly collaborate with partners representing pharmaceutical companies, research universities, and more to achieve that goal.

Advocacy & Awareness

Raising awareness and effective advocacy are critical to effecting positive change in and for the Prader-Willi syndrome community. PWSA (USA) is committed to empowering individuals with PWS and their families with resources and tools such as the Public Policy Action Center.

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Resource Library

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Latest Articles

Sibling Caregivers

Siblings often make excellent caregivers for their sibling with Prader-Willi syndrome (PWS) because they grow up around PWS, understand the realities of the syndrome, and are trained throughout their lives to take care of their sibling. Therefore, siblings seem to be a parent’s perfect choice to tend their family member with PWS and often...

Latest News & Events

Running for Research

PWSA | USA is happy to announce its partnership with Running for Research, a diverse group of runners dedicated to raising funds for the Prader-Willi Syndrome Research Fund at the University of Florida and Dr. Jennifer Miller’s work to identify effective treatments for children and adults with Prader-Willi syndrome (PWS). Since its founding in...

Soleno Therapeutics Announces Top-line Results from Phase III Trial of DCCR for Treatment of Prader-Willi Syndrome

Though the study did not meet statistical significance for Primary Endpoint, significant improvements were seen in a prespecified subgroup with severe hyperphagia. Significant positive changes were also seen in two of three key secondary endpoints. Interim analysis of Ongoing Extension Study (C602) showed further reductions in hyperphagia of 48% after six months of DCCR...