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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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New Diagnosis?

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

Join our mailing list for PWS community updates and other relevant information.
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Update Contact Info

Let us know your updated information so you can stay up to date with all things PWSA.
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What we do

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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)

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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.

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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.

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PWS Events & Fundraisers

Upcoming Events

April 2024
Apr 20
20 April 2024

When: Saturday, April 20, 2024 from 11:00am - 2:00pm EST Where: Glacier Ridge Metro Park, 9801 Hyland-Croy Rd, Plain City, Ohio 43064 Register to ATTEND or SPONSOR the Hope United Ohio 5K & Family Fun Run in support of Prader-Willi kids like us! Proceeds from this event will benefit PWSA | USA’s Advocacy, Family Support, and […]

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May 2024
May 13
13 May 2024
Washington, D.C.,

2024 D.C. Fly-In application now available! Soar to new advocacy heights in Washington, D.C.! We are excited to announce the application to attend PWSA | USA’s 2nd D.C. Fly-In, which will take place May 13 – 15, 2024, is now available. Find important disclaimer information by scrolling below, including what expenses PWSA | USA will be […]

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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 […]

Tuesday March 26 2024 5pm PST 8pm EST 4, Prader-Willi Syndrome Association | USA

Visit our Blog

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Interactive Map for PWS Families in the Pacific Northwest

Contributed by Vonnie Sheadel Washington and Oregon Chapters Creating Interactive Map for PWS Families PWSA of Oregon and Washington are…

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Donor Spotlight: Your Journey Team (powered by AMR Real Estate Indianapolis)

Contributed by Niki Fuller Allow me to take a moment to share a personal journey that has profoundly impacted our…

Tuesday March 26 2024 5pm PST 8pm EST 4, Prader-Willi Syndrome Association | USA

2025 International PWS Conference Announcement!

PWSA | USA is pleased to announce a new partnership with the Foundation for Prader-Willi Research (FPWR) and the International…

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Lifestyle Practices to Manage Gastroparesis

  The lifestyle aspect of managing gastroparesis is often overlooked or underestimated. Some people think it is too simple a…

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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…

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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…