Advocating for Alström Syndrome Worldwide

Alström Syndrome International accelerates research, builds community, and advocates to improve the lives of people affected by this rare disease.

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About Us

A global nonprofit community fighting for a cure for Alström Syndrome.

Alström Syndrome is a rare and complex genetic condition that can impact vision, hearing, heart function, metabolism, and more. The nonprofit maintains and manages the largest Alström clinical database in existence, and advocates for patients in forty-seven countries, representing every ethnicity

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Support

We foster a community of families, researchers and clinicians.

We provide support, information, and coordination world-wide to families and professionals effectively treating Alström Syndrome as we work toward a cure.

For Families & Advocates

For Researchers

For Clinicians

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Make a difference by donating to help us continue the fight in finding a cure. Your support helps numerous affected individuals to live a better life and combat this difficult rare disease.

Donate to Alström Syndrome

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About Alström Syndrome

Alström Syndrome affects 1 in 514,000 people.

Alström Syndrome is caused by a change in a gene called ALMS1. It affects many parts of the body, but not ALL people have ALL symptoms. That’s why we provide families with detailed information and resources for Alström Syndrome. We also foster scientific research collaborations worldwide and provide up-to-date diagnostic criteria and treatment recommendations.

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