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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.

Shwachman Syndrome Support UK

Address

6 The Link Rye
East Sussex, TN31 7BT
United Kingdom

Phone

017-972-23675

Fax

--

800 Number

--

Email Address

mail@sdsuk.org

Website

http://www.sdsuk.org/

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.

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