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Alström Syndrome UK
a/k/a: AS UK
49 Southfield Avenue
South Devon, TQ3 1LH
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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