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Alstrom Syndrome UK
a/k/a: AS UK
Address:
49 Southfield Avenue
Paignton
South Devon, Intl TQ3 1LH
United Kingdom
Phone: 018-03 -524238
Fax: 018-03 -524238
800 Number: --
TDD: --
Email Address: info@alstrom.org.uk
Alstrom Syndrome UK is an international voluntary health organization dedicated to providing information, resources, and support to individuals affected by Alstrom syndrome, family members, and healthcare professionals. Alstrom 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. Alstrom Syndrome UK was established in 1998 by the parents of two children with the disorder. The organization, which is affiliated with the Society of Alstrom Syndrome Families (SASF International Research Group), is committed to raising public and professional awareness of Alstrom syndrome, promoting research into the cause of the disorder, and engaging in patient advocacy. In addition, Alstrom 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.
Chapters: 2
Website: http://www.alstrom.org.uk
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