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Cleft Palate / Cleft Lip

 Updated 5/2004

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Cleft Palate / Lip affects one in every 700 births, and is the most common facial birth defect. Learn more at these sites.
 
[bullet] American Cleft Palate-Craniofacial Association (ACPA) and Cleft Palate Foundation (CPF) On-line Information Center [link not working 7/18/2000]
Mostly information about these organizations, a nonprofit professional association and its public service affiliate.
 
[bullet] International Institute for Birth Defects (cleft.net)
The Institute is a nonprofit organization established to "provide support, research and prevention services to families and individuals around the world." Its web site offers general information about prevention and research, as well as opportunities for networking via bulletin boards and mailing lists. While we support the networking opportunities, we are somewhat concerned that there is no indication of medical oversight for the informational material, and that visitors are asked to register for a free newsletter and for research purposes, but there is no stated privacy policy.
 
[bullet] Smiles
"SMILES" is "a group of dedicated families who have developed a first-hand understanding of the needs of children with cleft lip, cleft palate and craniofacial deformities." Their web site includes information about their children, cleft palatte management, otolaryngological issues, speech language, genetics, and related topics. This page also has a discussion group, and a survey with no stated privacy policy.
 
[bullet] Wide Smiles[starred entry]
This extensive web site is packed with articles and information for parents, kids, and anyone interested in cleft lip or palate. Topics covered include feeding issues, surgery, causes, Pierre Robin, insurance Issues, dentistry/orthodontia, audiology, speech, school & self esteem
related syndrome, and much more. A must visit for new parents especially.
 
[bullet] Related Subjects
[bullet] Facial Differences[starred entry]
[bullet] Rare Disorders
[bullet] Stickler Syndrome
[bullet] Specific Disabilities
[bullet] Resources in your state
 
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