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.
Shwachman Syndrome Support UK
6 The Link Rye
East Sussex, TN31 7BT
The Shwachman Syndrome Support UK is a voluntary, non-profit organization that functions as an international support system for individuals diagnosed with Shwachman syndrome and their families. Shwachman syndrome is an extremely rare inherited disorder with multiple and varied manifestations. In most cases, the disorder may be characterized by signs of insufficient absorption (malabsorption) of fats and other nutrients due to abnormal development of the pancreas (pancreatic insufficiency); abnormal bone development affecting the rib cage and/or bones in the arms and/or legs (metaphyseal dysostosis); short stature; and/or improper functioning of the bone marrow (bone marrow dysfunction), resulting in low levels of circulating blood cells (hematologic abnormalities). The Shwachman Syndrome Support Network acts as a link between affected individuals and families seeking support and information and to raise funds for research into treatments and a potential cure for Shwachman syndrome. The organization facilitates a central registry and medical profiles of individuals with this disorder. The support group, which was established in 1993, seeks to increase awareness of this disorder among the medical community and the public. The Network publishes a periodic newsletter entitled "Shwachman Syndrome Support Newsletter" and answers queries from around the world via telephone, mail and e-mail.
The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and that credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions are strictly prohibited.
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.