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Alstrom Syndrome International
a/k/a: ASI
Address:
The Jackson Laboratory
600 Main Street
Bar Harbor, ME 04609
Phone: 207-244-7043
Fax: 207-244-7678
800 Number: 800-371-3628
TDD: --
Email Address: jan.marshall@jax.org
Alstrom Syndrome International (ASI) is a not-for-profit organization for individuals with Alstrom syndrome, their families and friends, healthcare professionals, researchers, and all individuals whose lives have been touched by this rare disorder. Alstrom 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. Alstrom Syndrome International was established by six affected families in 1995 (as the Society for Alstrom 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 Alstrom 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.
Chapters: 4
Website: http://www.jax.org/alstrom
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