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Prader-Willi Syndrome Association | USA

Empowering Individuals, Supporting Families

PWSA | USA's 24-Hour Crisis Phone Line: (941) 312-0400

PWSA | USA’s 24-Hour Crisis Line provides immediate, expert support to families facing medical or behavioral emergencies, ensuring you are never alone during critical moments. Available 24 hours a day, every day of the year (including holidays), our knowledgeable Family Support Team is always on the other end of the line, ready to listen and help. You can also email our team at info@pwsausa.org.

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.

What is Prader-Willi Syndrome? (PWS)

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.

PWS Research

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

Registration is now OPEN for the 2025 International PWS Conference.

Join PWSA | USA, IPWSO, and FPWR June 24-28, 2025, in Phoenix, Arizona!

50 Year Anniversary of PWSA USA

Celebrating 50 Years of Support, Advocacy, and Progress

New Diagnosis?

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

Join our Newsletter

Join our mailing list for Prader-Willi Syndrome Association updates and other relevant information.
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PWS United Podcast

A podcast produced by PWSA | USA for the Prader-Willi syndrome community! Find PWS United on Apple Podcasts, Spotify, or anywhere you listen to podcasts.
Listen Now

May is PWS Awareness Month!

The month of May is an important time for our rare disease community because it's recognized as Prader-Willi Syndrome Awareness Month. While advocacy efforts, the fight for research advancements, and the celebration of our loved ones are important 365 days a year, the 31 days in May offer an opportunity to really show off our PWS pride. Find several different ways YOU can make an impact by clicking the button below!
PWS Awareness Month Hub

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).
Join the Initiative Today!

Discover the Vital Role of Growth Hormone in PWS Care

Explore PWSA | USA’s comprehensive Growth Hormone Booklet, a critical resource for families, doctors, and healthcare professionals.
Growth Hormone Booklet

PWS Events & Fundraisers

Upcoming Events
June 2025
Jun 04
04 June 2025

When: Wednesday, June 4, 2025 | 12:00 PM ET / 9:00 AM PT Where: Online via ZOOM Is this your first time attending a PWS Conference? Wondering how the Family Program works or what exciting events are planned? We’ve got you covered! Join Kristi Rickenbach, PWSA | USA Parent Support Coordinator, and Stacy Ward, PWSA […]

Jun 24
24 June 2025

PWSA | USA is pleased to announce a new partnership with the Foundation for Prader-Willi Research (FPWR) and the International Prader-Willi Syndrome Organisation (IPWSO) to host United in Hope – an International PWS Conference to be held June 24-28, 2025 at the Arizona Grand Resort and Spa in Phoenix, Arizona! The conference theme, “United in Hope” reflects […]

September 2025
Sep 06
06 September 2025
Heron Glen Golf Course, 110 State Highway 202 & 31, Ringoes NJ 08551 United States

To Register as a GOLFER or a TEAM click here Join us for a day on the links on Saturday, September 6, 2025 at Heron Glen Golf Course in Ringoes, NJ in remembrance of Jim Worthington. A portion of the proceeds will be donated to PWSA, in Jim's name. This event is inclusive for golfers […]

Visit Our Blog

Aardvark Therapeutics Launches HERO, A Phase 3 Trial of ARD-101 for Treatment of Hyperphagia in PWS; Now Enrolling Participants in the US

Aardvark Therapeutics Launches HERO, A Phase 3 Trial of ARD-101 for Treatment of Hyperphagia in PWS; Now Enrolling Participants in the US

Aardvark Therapeutics recently launched HERO, a global Phase 3 randomized, double-blind, placebo-controlled clinical trial of ARD-101.…

Spotlight on Hope: Lydia and Dalyas Dreamers

Spotlight on Hope: Lydia and Dalyas Dreamers

PWS Mom Jamie Caldwell, has found a unique way to celebrate her daughter, Lydia (3, living…

Spotlight on Hope: Mastering Karate with Cameron

Spotlight on Hope: Mastering Karate with Cameron

submitted by Lisa Graziano, proud mom to Cameron (26, living with PWS) Cameron Graziano, age 26…

VYKAT XR Town Hall Summary

VYKAT XR Town Hall Summary

On Tuesday, April 22, PWSA | USA and FPWR offered a PWS Community Town Hall for…

Unlocking a New Path to Treat Hyperphagia in PWS: A Conversation with Aardvark Therapeutics

Unlocking a New Path to Treat Hyperphagia in PWS: A Conversation with Aardvark Therapeutics

Hyperphagia, the relentless hunger that those living with Prader-Willi syndrome (PWS) experience, remains one of the…

Zahra’s Night of Light Shines Bright!

Zahra’s Night of Light Shines Bright!

What a night! On April 3rd, the Dorson Family, Pia, Dave, Zahra, Ronin, and Zoe, hosted…

Giving HOPE
Creating IMPACT

Be a part of something great. We are utterly dedicated to giving hope to those in need, creating a lasting impact for them.