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Prader-Willi Syndrome Association USA

Empowering Individuals, Supporting Families

2025 PWS Conference Logo

Registration is now OPEN for the 2025 International PWS Conference. Join PWSA | USA, IPWSO, and FPWR June 24-28, 2025, in Phoenix, Arizona!

Registration is now open for the 2025 International Prader-Willi Syndrome Conference in Phoenix Arizona! Prader-Willi Syndrome Association USA, FPWR and IPWSO are coming together to bring you the most up-to-date medical information, help and HOPE for parents and caregivers, a safe and fun space for your loved ones with PWS and their siblings, and a time to connect with other families. Space at the camps is limited; once they are full, we will close registration. Mark your calendars and register early! Find additional details and the Conference and Camps registration form at the button below.

Rare aware art share

Between July 1 – August 15, 2024, PWSA | USA is collecting artwork for Theme #2 in our PWS Rare Aware Art Share! We’re looking for artwork that answers the question:

What's something unique about where you live?

Think about where you live. Look out your window or take a walk in your neighborhood or town. Describe what you see in your art piece. Show us what your world looks like. If you can, include yourself in your artwork. How do you fit into the world you live in?

Join the PWS Connect Community & Research Initiative

Become a part of the PWS Connect Community to help accelerate scientific progress for people living with Prader-Willi syndrome (PWS). By joining, you’ll share your experiences, contribute to groundbreaking research, and help researchers understand the challenges faced by those with PWS. Your insights and participation will directly support the mission to improve the lives of the PWS community. All personal information will be de-identified for privacy, ensuring your data is protected.

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Prader-Willi Syndrome Association | USA

A newboard baby with a new Prader-Willi Syndrome diagnosis

New Diagnosis?

Fill a New Diagnosis form to receive our Package of Hope, a Parent’s Guide to Prader-Willi Syndrome.
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Join our Newsletter

Join our mailing list for Prader-Willi Syndrome Association updates and other relevant information.
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What we do

PWS Advocacy & Awareness

Increasing awareness and effectively advocating for Prader-Willi syndrome at the state and federal level is a critical component of our mission. We seek to involve all members of our community and work to keep you informed on the best ways to affect change.

What is Prader-Willi Syndrome? (PWS)

Group of Individuals Advocating for those living with Prader-Willi Syndrome
Family affected by Prader-Willi Syndrome

PWS Family Support

PWSA | USA' Family Support team provides individuals diagnosed with Prader-Willi syndrome, their families, and care providers with critical information and resources on PWS. We also provide education to medical providers, schools, and professional care givers through ongoing trainings, toolkits and other valuable resources. We support the family from the NICU through all stages of the PWS journey.

Prader-Willi Syndrome Research

PWSA | USA seeks to support research projects with the potential for immediate and high impact for the Prader-Willi Syndrome 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.

Prader-Willi Syndrome Research
Prader-Willi Syndrome Association New Address

PWS Events & Fundraisers

Upcoming Events

September 2024
Sep 30
30 September 2024
Ritz-Carlton Members Golf Club, 15150 70th Terrace E,
Bradenton, FL 34202 United States

Tee off for a great cause at RMC's annual golf tournament, benefiting innovative research and community support initiatives. Enjoy a round of golf while making a positive impact on those living with Prader-Willi Syndrome. When: Monday, September 30, 2024 8:30 a.m. shotgun start Where: Ritz-Carlton Members Golf Club Bradenton, FL Register TODAY at https://www.thermcfoundation.org/golf2024. The […]

October 2024
Oct 05
05 October 2024
The Back Nine Club, 17 Heritage Hill
Lakeville, MA 02347 United States

Calling all New Englanders – Join the Lens family for a full afternoon of fun activities! The 15th Annual Hunter Lens Golf Tournament will take place Saturday, October 5, 2024, at 12:00 p.m. EST at the Back Nine Club (17 Heritage Hill Dr., Lakeville, MA 02347). Enjoy time with family and friends while participating in golf, […]

Oct 11
11 October 2024
Rock Spring Golf Club, 90 Rock Spring Rd
West Orange, NJ 07052 United States

Join us for a day on the links on Friday, October 11, 2024, at Rock Spring Golf Club in West Orange, NJ in remembrance of Jim Worthington. A portion of the proceeds will be donated to the PWSA, in Jim’s name. This event is inclusive for golfers and non-golfers alike – all skill levels are […]

Visit our Blog

PWSA | USA’s Podcast has a New Name!

PWSA | USA’s Podcast has a New Name!

As part of our ongoing efforts to best serve the Prader-Willi syndrome community, we are introducing a new name for…

Spotlight on Hope: Climbing (Another) Mountain

Spotlight on Hope: Climbing (Another) Mountain

contributed by Anne Fricke Last year around this time, Freya climbed Mount Lassen (a 10,000+ foot volcano in Northern California).…

FDA Advisory Committee to Review DCCR as Treatment for Hyperphagia in PWS

FDA Advisory Committee to Review DCCR as Treatment for Hyperphagia in PWS

The FDA has announced its plan to conduct an Advisory Committee Meeting as part of its review of Soleno Therapeutics’…

Lifestyle Practices to Manage Gastroparesis

Lifestyle Practices to Manage Gastroparesis

  The lifestyle aspect of managing gastroparesis is often overlooked or underestimated. Some people think it is too simple a…

Creating a Parent Input Statement for Your Child’s IEP

Creating a Parent Input Statement for Your Child’s IEP

Contributed by PWSA | USA’s Director of Family Support Stacy Ward, MS As a parent, you know your child best…

Soleno Therapeutics Reports Positive Results from DCCR Study C602 for Prader-Willi Syndrome

Soleno Therapeutics Reports Positive Results from DCCR Study C602 for Prader-Willi Syndrome

Soleno Therapeutics, Inc. has revealed positive outcomes from the randomized withdrawal phase of Study C602, an extended treatment study of…