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

Featured Resource

Latest Articles

Help Us Learn More: Survey on Dangerous Condition in PWS

Survey: Vascular Blood Clots, Deep Vein Thrombosis (DVT) and/or Thrombosis in Prader-Willi Syndrome Our recent review of causes of death at PWSA (USA) has increased our awareness of the risk of death due to blood clots to the lungs/ pulmonary embolism’s(PE’s) in Prader-Willi syndrome. Additionally, there have been two PE sudden deaths during a...

2015 Holiday Tips

Dear Friends, The holidays are typically a food fest in our country – and can be a time of stress for our PWS families. With good planning, it is possible to make it a happy holiday for all. If you will be with relatives, carefully plan ahead of time and communicate the importance of...

Noninvasive Prenatal Screening – Testing Now Available For PWS

Janalee Heinemann, PWSA (USA) Coordinator of Research and International Affairs Noninvasive prenatal screening (NIPS) – also called noninvasive prenatal testing (NIPT) or cell–free DNA testing – is now available for Prader-Willi syndrome (PWS). Testing can be done any time after 9-10 weeks gestation because DNA from the fetus circulates in maternal blood. The testing...

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