About Us
The world’s largest community fighting for a cure.
Alström Syndrome International is a 501 (c) (3) registered charity that represents patients in forty-seven countries representing every ethnicity.
Our Mission
To provide support, information, and coordination world-wide to families and professionals effectively treating Alström Syndrome as we work toward a cure.
Our Vision
A world where families affected by Alström Syndrome receive effective treatment, support, and understanding — and a cure is within reach.
About Alström Syndrome International
Empowering the Alström Syndrome Community Globally
Alström Syndrome International (ASI) is a 501(c)(3) nonprofit organization dedicated to supporting families and advancing research worldwide. ASI balances its work across Family Support, Education, and Research.
ASI provides support, information, and coordination world-wide to families and professionals effectively treating Alström Syndrome as we work toward a cure.
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ASI represents patients in 47 countries across all ethnicities
Provides families with a comprehensive Family Handbook and resources
Promotes communication among global support groups
Balances its work across Family Support, Education, and Research
Manages the world’s largest Alström Syndrome clinical database
Sponsors international scientific meetings and family conferences
Supports patient participation in research studies
Publishes newsletters and maintains an extensive website
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Collaborates with researchers, physicians, and institutions worldwide
Shares up-to-date diagnostic and treatment information
Supports patient participation in research studies
Publishes newsletters and maintains an extensive website
Secures funding through grants, philanthropy, and annual giving
Provides families with a comprehensive Family Handbook and resources
Promotes communication among global support groups
Sponsors international scientific meetings and family conferences
-
Collaborates with researchers, physicians, and institutions worldwide
Shares up-to-date diagnostic and treatment information
Supports patient participation in research studies
Secures funding through grants, philanthropy, and annual giving
Manages the world’s largest Alström Syndrome clinical database
Meet the Team
The People Behind the Mission
Our team brings together dedicated clinicians, researchers, advocates, and families, working hand-in-hand to support the Alström community and accelerate progress toward better understanding, improved care, and a cure.
The Damla
Drop by drop, we make a lake.
Our community is small but incredibly strong, and at the heart of it all is connection. At our events, we share a glass Damla—a single water drop—as a symbol of our belief that “Drop by Drop, We Make a Lake.” Together, through our stories, strength, hope, and science, we are making a difference.
Regional and International
Alström Syndrome Global Partners
Looking to find a community near you? Check out our page of ASI around the globe.
Our Partners
We’re proud to collaborate with leading organizations to strengthen research, advocacy, and support for the Alström community.
Looking for Resources?
Find helpful information, tools, and guides to better understand and manage Alström Syndrome.
Help Find a Cure
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.