Welcome - Alstrom Syndrome Community

What is Alstrom Syndrome ?

Alström Syndrome is a Ciliopathy, it causes childhood blindness, hearing loss, dilated cardiomyopathy, obesity, type two diabetes, kidney failure and many associated problems.

Source: Participating patient organizations visible below

Alstrom Syndrome Resources

More members stories

Latest Member Stories

Spanish Association of Alstrom Syndrome

by susanacaas published 27 days ago

Hello. My name is Susana. I live in Guadalajara and I am the mother of a 14 years-old child who's been diagnosed with Alstrom Syndrome. I was aware...

Alström syndrome

by Charl published 5 months ago

At first, we were told that he suffered from achromatopsia. Because of that, we had a genetic test. The result of this was Alström syndrome.

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.