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- EIN 01-0515187
- (207) 288-6385
- 14 Whitney Farm Rd Mount Desert ME 04660-6302 USA
- www.alstrom.org
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Nonprofit Overview
Causes: Developmentally Disabled Centers, Disabilities, Health, Human Services
Mission: To provide support, information, and coordination world-wide to families and professionals in order to treat and cure alstrom syndrome.
Programs: Research: asi supports research genotyping patient dna samples for phenotype correlations; collecting patient medical records for a database of clinical data; and expanding an improved clinical/medical records database.
family support: asi supports travel to the greater baltimore medical center clinics, provides braille equipment, hearing aids and other medical assistive devices for patients in 3rd world countries, hosts the asi website and social media outlets, and sends "family packets" to newly diagnosed families. Asi conferences, held every three years, are of enormous importance to the families.
education: asi produces the alstrom syndrome handbook that covers all topics relative to patients, families, physicians, and research scientists with an interest in alstrom syndrome. The handbook was distributed to 240 families and more than 300 physicians, research scientists, and other professionals.