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.



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

Sharing Our Rare: Sue Colon

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...

Creating Your Child’s Education File

Have you ever walked away from an Individualized Education Program (IEP) meeting and thought to yourself, “That’s not what they told me during the last meeting” or, “Why are we having the same discussions each meeting? This is a waste of time.” Having an organized file that encompasses all documents regarding your child’s education will...