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Prader-Willi Syndrome Association (U.S.A.)

Contact Information

Jana Lee-Heinemann, Executive Director
5700 Midnight Pass Road
Suite 6
Sarasota, FL 34242

800-926-4797 (Voice - Toll-free)
941-312-0400 (Voice)
941-312-0142 (FAX)

Internet Resources

national@pwsausa.org

www.pwsausa.org/

Abstract

The Prader-Willi Syndrome Association is a group for parents and professionals interested in children affected by Prader-Willi Syndrome. The Association provides a forum for the exchange of ideas and experiences. The Association sponsors an annual conference and publishes educational material.

Publications

Educational materials include a handbook available in English, French, and Spanish for parents, conference papers, fact sheets on dietary management of the Prader-Willi person, and a Prader-Willi Syndrome bibliography. Serial publication: Gathered View (newsletter), bimonthly--accounts of Association projects and funding, idea exchanges among parents of Prader-Willi children, and dietary planning suggestions. A videotape is available for rental, and a slide tape presentation may be rented or purchased.

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Notes

Audit

Date Entered: 6/1/1998
Date Edited: 11/4/2003
Date Revised: 2/5/2003
Health Referral Number: HR0810
Accession Number: DP91A0196

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