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

Katie and Hannah

by CatherineLewis published 20 days ago
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Adorable twins Katie and Hannah were diagnosed with Alström Syndrome when they were 4 years old.

Hannah was very ill for the first year of her l...

Spanish Association of Alstrom Syndrome

by susanacaas published 3 months ago
4 comments

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...

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.