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Below you will find a
link to the Beckwith-Wiedemann Family Chat Forum. There you can contact
other families who are dealing with BWS. The support and information
these families can give is extremely helpful to families who need to know
they aren't alone in this. This resource is absolutely free. Please join
us!
If you'd like to visit the discussion group before joining, you can do so
by following this link:
Beckwith Wiedemann Family Chat Forum
Medical Stuff
Beckwith-Wiedemann Syndrome Registry
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The BWS Registry is a database of information
collected from generous families affected by this congenital overgrowth
disorder. Through the BWS Registry and associated studies, we hope to
better understand the cause of BWS and how to best clinically manage it.
Beckwith-Wiedemann Syndrome - OMIM
Beckwith-Wiedemann Syndrome - Peb Base
More Support/Information/Resources
For Parents
Genesis Fund
Internet Resources for Special Children
PDP Products Online Store - products for
oral-sensorimotor development
Surgeon Database for Tongue Reduction Surgery
Dutch BWS Web Site
UK BWS Web Site
Groupe
de discussion du syndrome Beckwith Wiedemann
Italian BWS Web
Site
Keep Kids Healthy.com
Social Security
Administration Benefits for Children
with Disabilities Booklet
What you need to know when
you get SSI
Medicaid
Medicaid Waiver
Programs
National Respite Locator
Service
Journal Articles and Lectures
Pediatric Liver Tumors
Beckwith Wiedemann Syndrome - The Pediatric Bulletin
Abdominal Wall Defects
Hemihypertrophy
Macroglossia
Genetics of BWS:
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American Journal of Medical Genetics 79:253-259 (1998). (abstract)
Kid's Stuff
About Teasing
BandAides & Blackboards
The Bearable Times Kids and Teens Club
Kid Care
Kids Health.Org
Nava's Story
Tyler's
Story
Trevor, Wilm's Tumor
Hospital Information
The Toronto Hospital For Sick Children
St Louis Children's Hospital
Virtual Children's Hospital
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