Amplify Progress and Accelerate Treatments

Join us for PWS Awareness Month

We’ve come a long way since our first PWS awareness month! When the House passed Resolution 55 in 2019 establishing May as PWS awareness month, there were no potential treatments on the horizon. Today, we have nearly half a dozen treatments in clinical trials with more to come.

PWS Awareness Month is an opportunity for us to come together as a community, show our unity and strength, and help educate the world on PWS and our need for continued research. What can you do to advocate for PWS?

3 Things To Do This Month 

  1. Share PWS facts.
    We have put together daily facts that will be shared daily on FB and Instagram. You can also sign up for our daily email and receive our facts directly to your inbox! Sign up for our daily facts >>

  2. Complete surveys in the Global PWS Registry.
    As a general standard, the FDA requires positive results in 2 controlled studies or 1 well-controlled study with confirmatory evidence, such as natural history data from the Global PWS Registry. We need members of the PWS community to continue to complete surveys in the Registry so that we have a robust data set that reflects the entire PWS population. Visit the registry today >>

  3. Fundraise or donate to support our research efforts.
    Everything we do, we can do because of YOU. Nearly every dollar we have for research has come from affected families and their networks of relatives, friends, colleagues, and neighbors. Do you want treatments, and a cure, for PWS? If so, we invite you to join Team FPWR and play a vital role by fundraising for PWS research. Fundraise >> or Donate >>  to support our efforts.




When you set up a fundraising page, it's easy to reach out to family and friends!



Support our mission to find new treatments for PWS.



Sign up for our awareness month emails and receive a daily, shareable PWS Fact.

Learn More About PWS

Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. PWS is recognized as the most common genetic cause of life-threatening childhood obesity. Learn more >>

Receive A Daily PWS Fact By Email 

Sign up for our awareness month emails and you will receive a daily graphic with a PWS-related fact to help spread awareness!

Fact Sign UP


Advocate for PWS 365 Days a Year!

Are you a parent or caregiver of a person with PWS? The #1 activity you can do to help advocate for your loved one is to participate in the Global PWS Registry. The Global PWS Registry is a powerful tool for the PWS community to advance understanding of PWS, areas of unmet need, standards of care, and new therapies. Data from the registry is shared back to the PWS community, used by researchers and scientists to advance PWS research, and has been the basis of our discussions with the FDA as we help them understand our community's need for treatments.

We encourage you to enroll in the registry and update your surveys annually. Get started today!

PWS global registry


Our Message of Hope


Story of Hope

A Glimpse Into the Life of a High School Senior, Who Also Has PWS.

By guest blogger Gillian Segall, 18 years

gillian5Graduating from high school is something that many kids and their parents take for granted. But I’m a kid with Prader-Willi Syndrome so my journey has been full of ups and downs. The “ups” have been amazing: I will be graduating in May, made my high school honor society, was named a “True Giant” for making my school a better place, and also qualified for state Special Olympics in swimming. But the “downs” have made it really hard to get here.

One of my biggest challenges was learning how to ... Read More >>

Featured Video: What is PWS?

Advocacy In Action

In the Spring of 2021 FPWR and PWSA |USA submitted a petition letter including the responses of 26,640 community supporters asking the FDA to apply regulatory flexibility in their review of new treatments for PWS. Read our letter to the FDA and download the full community response >>

Community Petition Download (2)-png