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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Smith-Lemli-Opitz/RSH Foundation

a/k/a: SLORSH

Address

P.O. Box 212
Georgetown, MA 01833

Phone

978-352-5885

Fax

--

800 Number

--

TDD

--

Email Address

sloinfo@smithlemliopitz.org

Chapters

1

Website

http://www.smithlemliopitz.org

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 volunteers, 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, and information about ongoing research. It also sponsors regular national meetings where physicians, scientists, and parents can meet to learn more from each other. Another goal of the foundaiton is to raise and provide funds to promote research into treatments and, ultimately, a cure for SLO/RSH syndrome, a genetic disorder that affects the development of children both before and after birth.

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