Alstrom Syndrome International

The Alstr�m Syndrome International (ASI) is a non-profit organization for individuals with Alstr�m syndrome, their families and friends, healthcare professionals, researchers, and all individuals whose lives have been touched by this rare disorder. Alstr�m 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. Alstr�m Syndrome International was established by six affected families in 1995 (as the Society for Alstr�m 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 Alstr�m 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.