Resources- Specific Diagnosis Card Catalog- Beckwith-Wiedemann Syndrome

Who to Contact

Beckwith-Wiedemann Support Network (BWSN)
2711 Colony Road
Ann Arbor, Michigan, USA 48104
(734) 973-0263
(800) 837-2976 Parents Only
Fax: (734) 973-9721
Web: www.beckwith-wiedemann.org/

The Beckwith-Wiedemann Support Network provides information and peer support to people and families affected by Beckwith-Wiedemann Syndrome, works to increase public and professional awareness and encourages research into the cause, early (including prenatal) detection, and treatment of BWS.

BWSN will assist persons who wish to start a support group in their locality and provides parent-to-parent matching by similar situations and /or geographic location. They also try to match families with older children who have BWS with new families, to provide support and encouragement.

The Network publishes the Beckwith-Wiedemann Support Network newsletter three times a year, at no cost to members. Members also receive a family directory. BWSN also publishes a brochure, "What is Beckwith-Wiedemann Syndrome?" and offers a new parent packet that contains letters from physicians and the founder explaining the syndrome and the network, plus details of research being done. BWSN is in the process of developing a bibliography of books and articles that will provide information about the condition. They have available video tapes from their family conference.

The network collects information on physicians and researchers who treat/study this condition and will disseminate this information to its members. They also provide referrals upon request.

Where to Go to Chat with Others

Beckwith-Wiedemann List
A support and information exchange for caregivers of and people with BWS. In partnership with www.beckwith-wiedemann.org

BWSchat
An international democratic group aimed at promoting the exchange of Beckwith-Wiedemann Syndrome (BWS) related information and support between BWS affected individuals, as well as facilitating a lively discussion between group members, both on topic and off topic. Membership is open to anyone interested in BWS.

Learn More About It

Beckwith-Wiedemann Syndrome
from OMIM

MEDLINEplus Medical Encyclopedia: Beckwith-Wiedemann syndrome

Beckwith Wiedemann Syndrome

Beckwith-Wiedemann Family Forum Q&A

Beckwith-Wiedemann
From eMedicine

Links

The Beckwith-Wiedemann Support Group

The Beckwith-Wiedemann Family Forum

Beckwith-Wiedemann Syndrome - UK