pwsausa banner

Prader-Willi Syndrome Association | USA

Empowering Individuals, Supporting Families

Listen to the 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. You can also click the button below to find episodes on Podbean.

The 2024 Angel Drive is PWSA | USA’s largest annual fundraising campaign, dedicated to bringing hope and essential support to families and individuals impacted by Prader-Willi syndrome. This year, the Angel Drive not only supports our life-changing programs—like school advocacy, medical crisis support, and caregiver resources—but also marks the beginning of our 50th anniversary celebration. Your donations directly fuel our mission, helping families access vital services, empowering individuals, and fostering a connected and resilient PWS community.

Join us in giving the gift of hope by December 31st, and if you contribute by December 15th, you’ll be entered for a chance to win one of four exciting prizes. Together, let’s ensure that PWSA | USA is here to support families for another 50 years and beyond.

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.

2025 PWS Conference Logo
Rare aware art share

Between October 1 – December 1, 2024, PWSA | USA is collecting artwork for Theme #3 in our PWS Rare Aware Art Share! We’re looking for artwork that answers the question:

What's your favorite birthday memory?

Birthdays are often joyful celebrations in our lives. As PWSA | USA celebrates our 50th Anniversary/Birthday in 2025, we want to know what happy birthday memories you have. Was there a birthday when you got to go on a fun adventure or had a very special person celebrate with you? Are your favorite birthday celebrations with family and friends? Have you traveled for a birthday? Think of a birthday that you have had that made you very happy and use your art to tell us about it.

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.

pws-connect-on-discord

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.
Click Here

join-newsletter

Join our Newsletter

Join our mailing list for Prader-Willi Syndrome Association updates and other relevant information.
Sign Up

Updated-Contact-info

Update Contact Info

Update your contact information to stay informed about all the latest news and events from PWSA USA.
Update

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

November 2024
Nov 01
01 November 2024

CLICK HERE TO MAKE YOUR GIFT OF HOPE! As we approach the end of 2024, we are filled with gratitude for your unwavering support. This year has been a time of innovation and growth for the Prader-Willi Syndrome Association | USA (PWSA | USA), and it’s all thanks to your engagement and generosity Sharing and […]

June 2025
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 […]

Visit our Blog

The (Sometimes Messy) Details of Life in a Clinical Trial

The (Sometimes Messy) Details of Life in a Clinical Trial

contributed by Anne Fricke, mom to Freya (13, living with Prader-Willi Syndrome) Freya’s third and fourth appointments for the Harmony…

Letter to Community on FDA’s Extension of DCCR Review

Letter to Community on FDA’s Extension of DCCR Review

Dear PWS Families, We understand that hearing about the FDA’s extension of the review period for DCCR (diazoxide choline controlled…

FDA Extends Review Period for DCCR: What It Means for the PWS Community

FDA Extends Review Period for DCCR: What It Means for the PWS Community

On Tuesday, November 26, 2024, Soleno Therapeutics shared an important development regarding the New Drug Application (NDA) for DCCR (diazoxide…

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…