The Beckwith-Wiedemann Family Forum - BWSN
Organization URL(s)
julie@beckwith-wiedemann.infowww.beckwith-wiedemann.info/index.html
Other Contact Information
2711 Colony Road
Ann Arbor,
MI 48104
800-837-BWSN (2976) (Voice - Toll-free, Parent Hotline)
734-973-0263 (Voice)
734-973-9721 (FAX)
Description
Beckwith-Wiedemann Syndrome (BWS) is a congenital growth related disorder. There are roughly thirty characteristics which can be associated with BWS. Most often seen are enlarged tongue, umbilical hernia, and increased birthweight. These children are also at risk of developing hypoglycemia at birth and various types of tumors. The Beckwith-Wiedemann Support Network (BWSN) was established in 1989 to provide information and peer support to families and individuals affected by BWS, and to facilitate the exchange of information between parents and interested health professionals.
Print Resources
The BWSN publishes a newsletter 3 times yearly for its members, and distributes an informational brochure about Beckwith-Wiedemann syndrome and treatment guidelines.