Advocacy & Awareness

Upcoming Advocacy Events

Add Prader-Willi Syndrome as a recognized topic area for DOD research under the Congressionally Designated Medical Research Program’s Peer Reviewed Medical Research Program (PRMRP).

Find your Representative

PWS State Qualifier Campaign

We are excited to share that several new community members are in the beginning stages of having PWS added to their state’s list of developmental disabilities.

States That Recognize PWS 14, Prader-Willi Syndrome Association | USA

If you or someone you know is interested in leading the charge in your state, please email PWSA | USA at

Meet some of PWSA | USA’s advocates

PWSA | USA's Advocacy in Action Webinar

Check Out PWSA | USA'S
PWS Awareness Month Hub

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A Big Step Forward
EL-PFDD Meeting

Your voice made a difference! PWS’s First Externally Led Patient-Focused Drug Development Meeting was a success, and we’re working hard to share the results with our community. Stay tuned!

Promising Pathway Act

Send an email to your officials with one click!


Nutrition In The PWS Family, Prader-Willi Syndrome Association | USA

Nutrition in the PWS Family

Michael Tan, MS, RD, LDN, is a Dietitian who works with Dr. Jennifer Miller at the University of Florida Health. He spoke at PWSA | USA’s United in Hope Convention in June of 2023 and sees a large number of families in the PWS community. I reached out to Michael with some general questions about […]

Advocacy How To Begin 1200 X 630 Px 2, Prader-Willi Syndrome Association | USA

Ripple Effect: Advocacy in the PWS Community

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” —The Lorax, Dr. Seuss  Contributed by Jennifer Andrews, Advocate and Mom to Josephine A reluctant, “OK.” That’s how I got involved in advocacy with PWSA. Pretty unexciting, isn’t it? Well, so is the first plop when you throw […]

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Empowering Hope: Kayla Day’s Journey as a PWS Advocate

Meet our advocate, Kayla Day, mom to Luella, age 4 with PWS. Contributed by Kayla Day After having my daughter and receiving a late diagnosis of Prader-Willi syndrome, it took years before I could discuss it with others. In these 4 1/2 years, I have met amazing families and staff through PWSA | USA. The […]

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