Prader-Willi Syndrome

Disability/Illness Description:

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.

Associations/Groups:

The Prader-Willi Syndrome Association
The Association has a newsletter and hosts an annual national conference.
8588 Potter Park Drive, Suite 500
Sarasota, Florida 34238
Phone: 800-926-4797

Prader-Willi Syndrome Association of New England (PWSA)
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.
Mary Raymond, President
Phone: 978-207-1185
Email: murphyno7@aol.com

Other Information:

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.

GeneTests
Find a genetic testing clinic.

Additional resources:

National Institute of Health Genetics Home Reference

Genetic and Rare Diseases Information Center

Mayo Clinic

Fact Sheet last updated on: 12/14/2016