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Empowering Individuals
Supporting Families
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Here's How YOU Can Support PWS Advocacy Efforts
We encourage the PWS community to join PWSA | USA’s 2024 Walk a Mile in their Genes Advocacy Campaign. Participants will not only raise awareness for our rare disease, but needed funds to enable our organization and volunteers to effectively advocate for the unmet needs of our loved ones living with PWS. Get involved and learn more by clicking the button below.
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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
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)
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.
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.
Events & Fundraisers
Upcoming Events
Duxbury, MA 02332
Calling all New Englanders: Join the Gill Family for a full morning of fun activities! The 1st Annual Gavin Gill Classic Golf Tournament – Driving for a Cure, will take place on Saturday, September 7, 2024, at 9:00 a.m. EST at North Hill Country Club (29 Merry Avenue, Duxbury, MA 02332). Enjoy time with family […]
Join PWSA | USA for our September ECHO 4 PWS Webinar, Feeding and Swallowing with Roxann Diez Gross, PhD, CCC/SLP, and Ann Scheimann, MD, MBA. This presentation is designed to enhance the knowledge of the assessment and management of the clinical features of PWS and increase the clinical knowledge of the management of feeding /swallowing […]
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 […]
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, […]
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
FDA Accepts Application for New Drug DCCR, Moves to Priority Review
Exciting news for the Prader-Willi syndrome (PWS) community! Soleno Therapeutics has announced that the FDA has accepted their new drug application (NDA) for DCCR, a drug designed to treat hyperphagia in individuals with PWS aged 4 and older. This acceptance is a major first step, and the FDA has granted Priority Review, recognizing the potential […]
Introducing PWS Connect: The New Podcast for the Prader-Willi Syndrome Community
We are excited to announce that PWS Connect, a brand-new podcast from PWSA | USA, is launching on Friday, August 30, 2024, across all major podcast platforms. PWS Connect will be your go-to source for the latest news, research, advocacy efforts, and family support in the Prader-Willi syndrome (PWS) community. At PWSA | USA, our […]
Survey Results on the Aging Adult with PWS
Contributed by Barb Dorn, RN, BSN As I began my research looking at specific health issues in the aging adult with PWS, I soon learned that there was not much information on this topic. I did find a few articles that documented clinical evidence for early signs of aging. As far as dementia, I found […]