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 […]
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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.
If you or someone you know is interested in leading the charge in your state, please email PWSA | USA at Advocacy@pwsausa.org.
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A Big Step Forward
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!
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“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 […]
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 […]