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Strengthen the Evidence for Maternal and Child Health Programs

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Search Results: MCH Organizations

This list of organizations is drawn from the MCH Organizations Database. Contact information is the most recent known to the MCH Digital Library.

Displaying records 1 through 1 (1 total).

Beckwith-Wiedemann Support Network (BWSN)

Annotation: The Beckwith-Wiedemann Support Network (BWSN) is a national nonprofit organization for parents of children with Beckwith-Wiedemann syndrome (BWS) and concerned professionals. It provides information and peer support to people and families affected by BWS, works to increase public and professional awareness of BWS, and encourages research into the cause, early (including prenatal) detection, and treatment of BWS. Publications include a parent directory for family members, a newsletter produced three times a year, and a brochure, What is Beckwith-Wiedemann Syndrome? The network is a member of the International Beckwith-Wiedemann Association. BWSN also does cross references to Simpson-Golabi-Behemel Syndrome. SGBS has similar characteristics and parents with children diagnosed with SGBS can be members here and receive information.

Keywords: Beckwith-Wiedemann syndrome, Early intervention, Information services, Parent groups, Peer support Programs, Simpson-Golabi-Behemel syndrome, Support groups
   

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.