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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.


Alström Syndrome UK


Address

31 Shearwater Drive
Torquay, Devon TQ2 7TL United Kingdom

Phone

01709 210151

Email Address

info@alstrom.org.uk

Description

The Alström Syndrome UK (ASUK) is an international voluntary health organization dedicated to providing information, resources, and support to individuals affected by Alström syndrome, family members, and healthcare professionals. Alström syndrome is a rare genetic disorder characterized by progressive degeneration of the nerve-rich membrane lining the eyes (retinitis pigmentosa), resulting in early visual loss; mild to moderate deafness; glucose intolerance (non-insulin dependent diabetes mellitus) that develops in early adulthood; moderate obesity; progressive kidney failure; and/or other symptoms and findings. Alström Syndrome UK was established in 1998 by the parents of two children with the disorder. The organization, which is affiliated with the Society of Alström Syndrome Families (SASF International Research Group), is committed to raising public and professional awareness of Alström syndrome, promoting research into the cause of the disorder, and engaging in patient advocacy. In addition, Alström Syndrome UK conducts family conferences and offers other networking opportunities that enable affected families to exchange information, support, and resources. The organization's educational materials include an information packet, a bibliography of medical journal articles, and a regular newsletter.

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