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Smith-Lemli-Opitz Syndrome Advocacy & Exchange

Gulph Mills, Pennsylvania

Cause Description:
The Smith-Lemli-Opitz/RSH syndrome (SLO/RSH) is a genetic disorder that affects the development of children both before and after birth. In 1988, 37 families with SLO/RSH children began a network to exchange experiences and information about SLO/RSH. Since then, the membership has grown to more than 100 families in the United States and several foreign countries. In addition to informal networking and a regular newsletter, the Advocacy and Exchange sponsors regular national meetings where physicians, scientists, and parents can meet to learn more from each other. Another function of the Advocacy and Exchange is to promote and fund research on SLO/RSH.

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