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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
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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