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Alström Syndrome is a very rare, hereditary genetic disorder first described by C.H. Alström in Sweden in 1959. Since then, we have identified 500 individuals with Alström Syndrome in forty six different countries.  Alström Syndrome can affect people of all nationalities, ethnic groups, and races.

Alström Syndrome is progressive. The first sign observed in infants is usually extreme light sensitivity (photophobia) and a wobbling of the eyes (nystagmus). Another of the first signs MAY be dilated cardiomyopathy and congestive heart failure in infants under 1 year of age. Children rapidly gain weight during their first year and become obese as young children. Later, multiple organ systems in the body can be affected resulting in blindness, hearing impairment, type 2 diabetes, heart failure, liver disease, urological dysfunction, pulmonary fibrosis, and renal failure. For additional information see Clinical Features and Gene Reviews.

Alström Syndrome International

Our mission

To provide support, information, and coordination world-wide to families and professionals in order to treat and cure Alström Syndrome

ALSTROM SYNDROME INTERNATIONAL IS A 501(C)3 REGISTERED CHARITY

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