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 PWSA | USA September 19-21, 2022 in Washington, D.C. for our first-ever D.C. Fly-In Advocacy event. Learn more and find the application to attend by clicking below.
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
New Guidances Released for Disciplinary Actions in Schools
On July 19, 2022, the U.S. Department of Education Office for Civil Rights (OCR) and Office of Special Education and Rehabilitative Services (OSERS) released new guidances designed to clarify the use of disciplinary practices in schools. The guidances clarify that students with disabilities have legal rights and protections in the Individuals with Disabilities Education Act...
Participate in a PWS Specific Sleep Study
Has your 3–7-year-old child been diagnosed with Prader-Willi syndrome? Do they have trouble sleeping? You may be eligible to participate in a thesis study! If your child has a confirmed diagnosis of Prader-Willi syndrome, is awake at least once per night three nights of the week and has trouble going to bed at least three...
Get to Know Information and Referral Specialist Sarah Kasaby!
What’s your job title? Information & Referral Specialist What sort of duties do you have at work? Front desk Family Support calls and emails, Database merging Do you have any mentors in your professional life? Yes What was your first job? Customer Service Who inspires you? My boss, my brother, my husband What kind of...