You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z


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


P.O. Box 212
Georgetown, MA 01833





800 Number




Email Address




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.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

Copyright ©2015 NORD - National Organization for Rare Disorders, Inc. All rights reserved.
The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .