PRADER-WILLI SYNDROME is a birth defect first identified in 1956 by Swiss doctors A. Prader, H. Willi and A Labhart. There are no known reasons for the genetic accident that causes this lifelong condition which affects appetite, growth, metabolism and behavior. Those affected by the syndrome - about one in 12,000 - are very much alike in their physical symptoms, behaviors and other characteristics. Both sexes and all races are affected. The Prader Willi Syndrome Association provides a resource for education and information about Prader-Willi and support for families, professionals and other interested citizens.
The Prader-Willi Syndrome Association, NJ Chapter is formed to provide
support to parents and individuals with Prader-Willi Syndrome.
We strive to help educate both educators and the medical field on the needs of people with PWS.
We hold two meetings a year with featured speakers on Prader-Willi Syndrome and related areas.
We try to be involved politically for persons with PWS and to assist in their life's planning.
We are part of the Prader-Willi Syndrome Association USA which provides us with educational materials and coordinates research on PWS.
The Prader-Willi Syndrome Association - New Jersey Chapter
President Sybil Cohen - Questions on a young person with PWS or general information contact Sybil. Her phone number and email (general information) are listed below.
Executive Directors: Marjorie Royle & Douglas Taylor - contact for
general information adults with PWS and state wide services.
Use the Webmaster's email for them or call 973-628-6945
The NJ Chapter -PWSA web site is intended to provide information only - not to diagnose or advocate particular treatment options. Individuals should only make decisions about treatment options and diagnoses in close collaboration with their own health care team of professionals.
The inclusion of any resource or link in the PWSA-NJ Web Site does not imply endorsement.