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 14 days ago No comment

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 ...


by Kerry published about 1 month ago No comment

On arrival at the hospital I was asked to leave to allow the doctor to examine him and take an x-ray. As I left the room Kion stopped breathing fo...

Partners and Patient Groups

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