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Search Google for "Smith-Lemli-Opitz Syndrome"
The Smith-Lemli-Opitz/RSH Foundation was created in 1988 to give a group of 37
families with SLO/RSH children a network to exchange experiences and information
about SLO/RSH. Since then, the group has grown to more than 200 families in the
United States and across the world.
The Foundation, in conjunction with vounteers, set up e-mail groups for families
to contact each other informally. This provides immediate support for families
to ask questions, share in joyful times and share in grief or frustration.
Additionally, the Foundation provides regular newsletters, family support,
family contact information, specialist contact information, information about
ongoing research, and it sponsors regular national meetings where physicians,
scientists, and parents can meet to learn more from each other. Another goal of
the Foundation is to raise and provide funds to promote research into treatments
and ultimately a cure for SLO/RSH Syndrome.
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