We Are Stronger Together

Our Mission:
To enhance the quality of life of and empower those affected by Prader-Willi syndrome.

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. Donate to the Family Support Advocacy here.

 

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.

 

Events and Fundraisers

Latest News

The Zafgen Clinical Trial Partial Hold

I would like to assure our PWS members that both PWSA (USA) and FPWR have been involved with discussions with Zafgen and the FDA regarding safety issues on the Zafgen clinical trial. A “partial hold” means that the study can continue with additional safety monitoring. We are in full support of the additional safety monitoring...

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 is...

PWSA (USA) Joseph McErlane Research Grant

  PWSA (USA) is sponsoring a grant that will bring therapy to the home! PWSA (USA) Joseph McErlane Research Grant Project Title: Evaluating the Feasibility of a Telehealth Intervention of Early Social Cognitive Processes in Children with Prader-Willi syndrome Principal Investigator: Anastasia Dimitropoulos, Associate Professor of Psychology, Ph.D. Case Western Reserve University, Cleveland, OH  ...