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-Magenis Syndrome Foundation


London, WC1 N3XX
United Kingdom





800 Number




Email Address


The Smith-Magenis Syndrome Foundation is an international, self-help organization dedicated to providing information and support to individuals with Smith-Magenis syndrome and their families. Smith-Magenis syndrome is an extremely rare congenital disorder in which chromosomal material is absent from a certain portion of the short arm (p) of chromosome 17 (interstitial deletion 17p11.2) due to a spontaneous (de novo) genetic change early in embryonic development. Affected individuals may have a variety of associated symptoms and physical abnormalities including characteristic malformations of the head and facial area; abnormalities of the fingers and hands; speech delays and an unusually deep, hoarse voice; hearing loss; and/or moderate to severe mental retardation. In addition, many affected children may demonstrate self-destructive behavior. Established in 1992, the Smith-Magenis Syndrome Foundation UK is committed to disseminating information concerning Smith-Magenis syndrome to affected families and healthcare professionals; promoting awareness of the disorder in the United Kingdom; and providing networking opportunities to affected families to enable them to exchange information, support, and resources.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.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