Empowering Individuals

Supporting Families

Give the Gift of Hope

PWSA | USA’s 2023 Angel Drive campaign, Give the Gift of HOPE, kicks off Wednesday, November 1st, with donations being accepted through Sunday, December 31, 2023!

YOU can help be a positive force in our work and propel PWSA | USA’s momentum forward by supporting our end of year campaign. Your support ensures PWSA | USA can continue TAKING ACTION in the new year! Whether it’s working with volunteer advocates to raise our voices with legislators in Washington, D.C. about issues that matter most or helping you navigate the challenges associated with PWS, your year-end, tax-deductible gift ensures that PWSA | USA can continue to provide HOPE to families 24/7/365!

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 PWS.
Click Here

Woman advocating for families affected by Prader-Willi Syndrome

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Join our mailing list for PWS community updates and other relevant information.
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Updating Contact Information for a Prader-Willi Syndrome Database

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

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)

Group of Individuals Advocating for those living with Prader-Willi Syndrome
Family affected by Prader-Willi Syndrome

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.


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

Events & Fundraisers

Upcoming Events

November 2023
Nov 01
01 November 2023

As children, we always remember our favorite gifts bestowed at holiday times: a shiny red bike, a beloved doll, a new baseball glove. These gifts and the loved ones who gave them to us are forever etched in our memories now and always. As the holiday season begins and the new year approaches, PWSA | […]

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

More details coming soon! CLICK HERE to read through our 2022 D.C. Fly-In recap.

Visit our Blog

Joint Legislation Filed to have PWS Recognized as a Developmental Disability in Ohio

Joint Legislation Filed to have PWS Recognized as a Developmental Disability in Ohio

PWSA | USA is excited to announce that thanks to the dedication and hard work of our Advocacy Ambassador, Dr. Erin Carter-Cooper, PhD, Ohio Representative Rose Sweeney (D – District 16) and Representative Gayle Mannin (R – District 52) have jointly filed legislation that will make Prader-Willi syndrome a recognized developmental disability in the State of Ohio! […]

2024 DC Fly-In Hotel Announcement and  Application Release Date

2024 DC Fly-In Hotel Announcement and  Application Release Date

We are excited to share PWSA | USA’s 2nd D.C. Fly-In will take place May 13-15, 2024, and the event hotel will be YOTEL Washington DC | Capitol Hill Hotel (415 New Jersey Ave NW, Washington, DC 20001)! During the Fly-In, we will learn about Policy affecting the PWS community, hear from policy makers, and continue our […]

Here’s How YOU Can Support PWSA | USA’s Advocacy Initiatives in 2024

Here’s How YOU Can Support PWSA | USA’s Advocacy Initiatives in 2024

We can continue to make our voices and our stories heard through advocacy and community outreach. On January 16, 2024, YOU can sign up for PWSA | USA’s 2nd annual “Walk a Mile in their Genes” advocacy campaign. Participants will not only raise awareness about PWS, but they will raise much needed funds to enable […]