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

Two Alstrom Children un-diagnosed for 15 & 18 years respectively

by kayparkinson published about 1 month ago No comment

Looking at the photo today and knowing the horrors my children faced in later life because of not being diagnosed -is sad- but also empowering to h...

Alstrom syndrom Milan and Denan

by ilonagrootantink published about 1 month ago 2 comments

We have discovered they have this syndrome only 1,5 years ago.
This syndrome starts with poor eyesight and deafness, and involves the failure of ...

Partners and Patient Groups

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