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

my son Aleksandr

by Lora published 3 months ago No comment

My son was born with Alstrom syndrome. He is 16 years old. We live in Russia.

2013 Golf Classic Success!

by cassiejoy published 5 months ago One comment

The Alström Golf Classic was hosted by the Johnston Family from Lubbock, Texas. Their 4-year old daughter, Bryce, was diagnosed with Alström Syn...

Partners and Patient Groups

RareConnect is a joint venture of EURORDIS and NORD. The following patient groups are official partners of this community.