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
Join us for the 37th National Convention, June 21-24, 2023 in Orlando, FL!
Have you been looking for an easy way to raise awareness and funds to support PWSA | USA in your workplace, school or community group? If the answer is YES - click HERE!
Become a PWS Hope United Champion by hosting your own peer-to-peer fundraiser in support of PWSA | USA! Learn more by clicking below.
Latest News
Sleep Disturbances in Prader-Willi Syndrome
Contributed by Lynn Garrick, RN Sleep health is essential for everyone. It is just as important to take care of ourselves as parents and caregivers as it is for those living with Prader-Willi syndrome (PWS). We understand that disordered sleep has implications for cognitive outcomes, mental and physical health, and work and school performance. Sleep...
Residential Spotlight: Abilities Midwest in Wisconsin
Written by Kim Tula, MS, CSW Abilities Midwest is an adult residential provider in Wisconsin that only serves individuals diagnosed with Prader-Willi syndrome (PWS). They currently operate three PWS-specific group homes: One in River Falls, WI and two in Watertown, WI. All of these homes are licensed through the state of Wisconsin as an Adult...
Sharing Our Rare: Leslie and Corey Fuller
Rare Disease Day, which falls on February 28th each year, helps shine a light on the roughly 7,000 recognized rare diseases. To assist in this effort, we have been asking our community to tell us how you "share your rare" for Prader-Willi syndrome. One unique and impactful way we have heard from families is how...