Prader-Willi syndrome (PWS) is a non-inherited genetic disorder, which is most often associated with error or random deletion in the 15th chromosome. PWS may result in short stature, intellectual disability or learning disabilities, incomplete sexual development, characteristic behavior problems, and low muscle tone. People with Prader-Willi syndrome experience an involuntary urge to eat constantly, which, coupled with a reduced need for calories, often leads them to be obese.
The Foundation for Prader-Willi Research is composed of parents, friends, and relatives of people with PWS – people just like you. Join FPWR as we work together to eliminate Prader-Willi syndrome in the lives of our loved ones!
First Steps: A Parent’s Guide to Prader-Willi Syndrome
440 N Barranca Avenue #3620
Covina, CA 91723
Phone: 888-322-5487
Email: info@fpwr.org
PWSA | USA empowers the PWS community through shared experiences, research, education, advocacy, and support. With chapters in most states, ours is the only national PWS support organization whose sole purpose is to assist individuals with the syndrome, and their families, every step of the way.
Our office is now virtual but our mailing address is:
1032 E Brandon Blvd #4744
Brandon, FL 33511
Phone: 941-312-0400
The Association has a newsletter and hosts an annual national conference.
8588 Potter Park Drive, Suite 500
Sarasota, Florida 34238
Phone: 800-926-4797
Gives support to parents with newly diagnosed children, and is a resource for other services
(therapists, physicians) for children and adults with Prader-Willi syndrome and their families.
Phone: 978-207-1185
Email: murphyno7@aol.com
People with Prader-Willi syndrome can accomplish many of the same things as people without the disability. They go to school, participate in community activities and hold jobs. Additional supports are frequently required to enable people with Prader-Willi syndrome to fully participate in the community. Additional information may be available through genetic units at hospitals.
Fact Sheet last updated on: 8/27/2024
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