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.
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
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.
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
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.
Newly Diagnosed?
Navigating life with Alström Syndrome can present unique challenges, and we’re here to ensure you and your family never walk that path alone.
For Clinicians
Know the signs and clinical characteristics of Alström Syndrome for correct diagnosis.
For Researchers
Explore opportunities to collaborate in our ongoing Alström Syndrome research efforts.
Get Involved
Help drive awareness, research, and support for families affected by Alström Syndrome.
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Featured
Boots & BBQ for a Cure
A Benefit Dinner for Alstrom Syndrome International
Join us for ASI’s 3rd Annual fundraiser dinner and silent auction on Rare Disease Day this Feb. 28, 2026 at Lost Oak Winery in Burleson, Texas.
Enjoy an evening of food, live music, great company and giving back—all to support individuals and families living with Alström Syndrome.
The Latest
Find all the latest news, events and resources right here!
