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 7 months ago
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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...


by marinavalenti published 9 months ago
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E’ nata Valentina, una pallina rotonda, rosea con tanti capelli neri, dolce e carina. Il primo mese di vita lei dormiva sempre, a diffe...

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.