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.

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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

August 2024
Aug 18
18 August 2024
Kimpton Brice Hotel, 601 E Bay St
Savannah, GA 31401 United States

As residential providers and caregivers are integral to the health and well-being of those living with PWS, it is critical they have access to the latest information. PWSA | USA’s 2024 Residential Providers Conference, Empowerment Heroes: Reveal Your Superpowers, will offer a variety of lectures and workshops in a collaborative space where professionals can exchange practice-driven […]

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 […]

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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,…

Help Needed: Caregivers of Children with Prader-Willi Syndrome and Repetitive Verbal Behavior

Help Needed: Caregivers of Children with Prader-Willi Syndrome and Repetitive Verbal Behavior

Kasey Bedard, PhD, and her team at The Chicago School are seeking caregivers of children diagnosed with Prader-Willi Syndrome (PWS)…

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…