We Are Stronger Together

PWSA (USA) is a community of families, professionals, and organizations committed to providing support and hope to those affected by Prader-Willi syndrome. Together, we are showing the world children and adults with PWS need not be defined by their diagnosis.

Family Support

PWSA (USA) supports individuals diagnosed with Prader-Willi syndrome, their families, and care providers with critical information and resources. We educate medical providers, educators, and professional care givers about PWS and how to best support individuals with the syndrome.

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Research

PWSA (USA) seeks to support research projects with the potential for immediate and high impact for the PWS community. The goal is to fast-track better treatment for the syndrome, and we proudly collaborate with partners representing pharmaceutical companies, research universities, and more to achieve that goal.

Advocacy & Awareness

Raising awareness and effective advocacy are critical to effecting positive change in and for the Prader-Willi syndrome community. PWSA (USA) is committed to empowering individuals with PWS and their families with resources and tools such as the Public Policy Action Center.

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Resource Library

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Latest Articles

PWS Awareness Month – Week 3

Not on social media?  No problem!  PWSA (USA)’s daily PWS Awareness Month posts are available right here for you to access anytime.   Day 20 Hypogonadism (a condition in which the testicles are not working the way they should) and cryptorchidism (undescended testes) are both common newborn males with PWS and can lead to...

Exercise and Behavior

You’ve heard exercise is good for physical health, but did you know research also shows exercise is beneficial to mental health and mood? According to the Mayo Clinic, physicalactivity stimulates endorphins in the brain that elevate mood and encourage relaxation. Exercise can fend off depression and anxiety in individuals with PWS and can even...

PWS Awareness Month Week 2 Mini Blog – Positive Behavioral Support

So far, we have looked at some of the many reasons negative behaviors occur, as well as behavior management techniques helpful with individual with Prader-Willi syndrome. Positive Behavioral Supportis another essential tool for caregivers. Positive behavioral support can help decrease tantrums, reduce perseverative and OCD like behaviors, and increase cooperation and effective transitions through...

Latest News & Events

Two New Prader-Willi Syndrome Films

PWSAI (Ireland) has released a new film that was produced in cooperation with IPWSO and PWSA (USA). The film is Therapeutic Interventions for the Young Child with Prader-Willi Syndrome presented by Janice Agarwal, CNDT-PT The film was funded from the proceeds of the Galway Cycle 2014. We are very grateful to Janice for her...

The Zafgen Clinical Trial Partial Hold

I would like to assure our PWS members that both PWSA (USA) and FPWR have been involved with discussions with Zafgen and the FDA regarding safety issues on the Zafgen clinical trial. A “partial hold” means that the study can continue with additional safety monitoring. We are in full support of the additional safety...

Oxytocin Phase 2 Study Campaign Reaches Milestone!

In our first month of the Oxytocin campaign, we have exceeded $160,000! The PWSA (USA) Board matching gift fund of $50,000 was exhausted in less than a week! Thank you for your generosity and support for this study. To help us reach our next milestone in this potentially life-changing research study, please donate or...