Alstrom Syndrome UK

The Alstr�m Syndrome UK (ASUK) is an international voluntary health organization dedicated to providing information, resources, and support to individuals affected by Alstr�m syndrome, family members, and healthcare professionals. Alstr�m 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. Alstr�m Syndrome UK was established in 1998 by the parents of two children with the disorder. The organization, which is affiliated with the Society of Alstr�m Syndrome Families (SASF International Research Group), is committed to raising public and professional awareness of Alstr�m syndrome, promoting research into the cause of the disorder, and engaging in patient advocacy. In addition, Alstr�m 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.