Empowering Individuals

Supporting Families

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.

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?

Connect with Prader-Willi Syndrome Association | USA

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Fill a New Diagnosis form to receive our Package of Hope, a Parent’s Guide to PWS.
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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.
Learn about 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 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.

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

PWS Events & Fundraisers

Upcoming Events

July 2024
Jul 30
30 July 2024

REGISTER IN ADVANCE HERE Presenters: Lynn Garrick, RN, MSN, PWSA l USA Medical and Research Coordinator, Barb Dorn, RN BSN, PWSA l USA Volunteer Overview:  This webinar will highlight current research in the area of aging and PWS.  It will also identify the most common health issues being reported by parents, guardians and caregivers.  The […]

August 2024
Aug 06
06 August 2024

REGISTER IN ADVANCE HERE Presenters: Barb Dorn, RN BSN, PWSA l USA Volunteer Overview:  This webinar will continue discussion on commonly reported health issues by sharing risk factors, screening and monitoring tools as well as prevention and management strategies for additional health topics – respiratory issues, weight gain/obesity, low bone density, cardiac issues (high BP, […]

Aug 15
15 August 2024

Join PWSA | USA for our August ECHO 4 PWS Webinar, Cardiac Concerns with Dr. James Loker. On August 15, 2024, at 5:00 p.m. EST, Dr. Loker will discuss Cardiac disease, which accounts for 16% of all deaths in PWS. He will share the unique features of PWS that may predispose them to cardiovascular problems. […]

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Soleno Therapeutics Submits New Drug Application to FDA for PWS Treatment

Soleno Therapeutics Submits New Drug Application to FDA for PWS Treatment

On June 28, 2024, Soleno Therapeutics announced the company officially submitted a New Drug Application (NDA) to the U.S. Food…

Empowering Diversity and Inclusion for the PWS Community

Empowering Diversity and Inclusion for the PWS Community

In a significant step towards fostering equity and inclusion within our Prader-Willi syndrome (PWS) community, we are pleased to announce…

A Night to Remember: The 2024 Clint Hurdle Hot Stove Dinner

A Night to Remember: The 2024 Clint Hurdle Hot Stove Dinner

The 10th Annual Clint Hurdle Hot Stove Dinner was an extraordinary success, held at the Bradenton Country Club in Bradenton,…

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…