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 4 months 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 4 months 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.