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?
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 >>
Sign up for our awareness month emails and you will receive a daily graphic with a PWS-related fact to help spread awareness!
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!
By guest blogger Gillian Segall, 18 years
Graduating 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 >>
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 >>