My child has just been diagnosed with Prader-Willi syndrome.
Now what?
There’s a lot to learn about PWS, but you don’t need to learn it all at once. In these first days and weeks, a few steps can help you understand your child’s needs, connect with the right specialists, and begin building a strong care team.
FPWR was founded by parents of children with PWS, so we know how much information can come at you after a diagnosis, and if there's one thing we'd like you to know, it's this:
There is hope.
Much of the information about PWS online is outdated and often paints an unnecessarily bleak picture of what life with PWS can look like. While PWS is a complex condition that presents real challenges, today's children benefit from earlier diagnosis, better medical care, improved understanding of the syndrome, and a growing pipeline of promising research.
A diagnosis changes the information you have about your child. It does not change who your child is.
They will continue to learn, grow, surprise you, and bring joy to the people around them. There will be challenges ahead, but there will also be milestones, accomplishments, and moments that exceed your expectations.
Their future is still being written.
Why do we have hope?
Over the past two decades, research has transformed what is possible for individuals with PWS.
Growth hormone therapy has dramatically improved outcomes for many children. Researchers now understand more than ever about the genetics, biology, behavior, and medical needs associated with PWS. New treatments are being developed, tested, and brought to families faster than ever before.
In 2025, the first FDA-approved treatment for hyperphagia in PWS became available—an important milestone that many families once thought impossible.
At FPWR, we believe research is the key to improving quality of life, increasing independence, and expanding opportunities for people living with PWS.
Every breakthrough brings us one step closer to a future with more options, better treatments, and greater possibilities.
You are not alone.
There is an entire community ready to support you.
FPWR connects families with trusted information, educational resources, research updates, and opportunities to learn from experts and other caregivers who understand the journey.
We encourage you to explore the resources on this page, connect with our community, and learn about the work being done to improve the lives of people with PWS and those who love them.
Welcome. We're glad you're here.