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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 International

a/k/a: ASI

Address

14 Whitney Farm Road
Mount Desert, ME 04660

800 Number

800-371-3628

TDD

--

Email Address

jan.marshall@jax.org

Chapters

4

Website

http://www.alstrom.org

The Alström Syndrome International (ASI) is a non-profit organization for individuals with Alström syndrome, their families and friends, healthcare professionals, researchers, and all individuals whose lives have been touched by this rare disorder. Alström syndrome is a genetic disorder that is slowly progressive, affecting multiple organ systems. Affected individuals experience progressive degeneration of the retina, resulting in childhood blindness; mild to moderate hearing impairment; glucose intolerance (non-insulin dependent diabetes mellitus) that develops in early adulthood; childhood obesity that often moderates to high-normal weight in adulthood; progressive kidney failure; congestive heart failure that becomes apparent during infancy, adolescence, or adulthood; and/or other symptoms and findings. Alström Syndrome International was established by six affected families in 1995 (as the Society for Alström Syndrome Families, SASF) and currently consists of approximately 200 members. ASI's mission is "to provide support, information, and coordination world-wide to families and professionals in order to treat and cure Alström syndrome." The organization is committed to providing information, support, resources, and networking opportunities to affected individuals and family members; and promoting and encouraging genetic and clinical research with the ultimate hope of developing a therapy for Alstrom syndrome and related disorders.

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