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

Featured Resource

Latest Articles

Soleno Therapeutics Announces Top-line Results from Phase III Trial of DCCR for Treatment of Prader-Willi Syndrome

Though the study did not meet statistical significance for Primary Endpoint, significant improvements were seen in a prespecified subgroup with severe hyperphagia. Significant positive changes were also seen in two of three key secondary endpoints. Interim analysis of Ongoing Extension Study (C602) showed further reductions in hyperphagia of 48% after six months of DCCR...

Sunshine Means It’s Summertime!

Summer is the perfect opportunity to spend time with your family, have fun, and de-stress. Whether you are hiking near a remote waterfall, camping in your own backyard, riding bikes through the neighborhood, or running through the sprinkler, doing it as a family makes it more fun and helps create life-long memories. Individuals with...

Exercise: Healthy Fun for Everyone

You have 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, physical activity stimulates endorphins in the brain that elevate mood and encourage relaxation. Exercise can fend off depression and anxiety in individuals with PWS and...

Latest News & Events

National Direct Support Professional Week

Direct support professional (DSP) is an umbrella term that includes many different titles and functions; for example: direct care, direct support worker/specialist/assistant/counselor, habilitation specialist, residential counselor, activities of daily living specialist, relief staff, apartment worker, developmental disabilities specialist, job coach, employment specialist, community bridge-builder, paid friend/neighbor, family care provider, family support services aide, community...

Recruitment: Acceptance and commitment training (ACT) for fathers of adolescents with PWS, a pilot study funded by the Foundation for Prader Willi Research

Fathers who have an adolescent with PWS age 13-18 are invited to participate in a 4-session, online, small group training exercise to reduce father’s perception of stress, improve parenting satisfaction and increase family involvement. Participants must reside at home with their adolescent and the adolescent’s mother, have a personal computer with a camera, microphone and...