Welcome - Alkaptonuria (AKU) Community

What is Alkaptonuria (AKU) ?

Alkaptonuria (AKU) is a rare autosomal recessive disease, affecting tyrosine metabolism. Patients accumulate homogentisic acid at 2000 times the normal rate, resulting in cartilage degradation and symptoms similar to early-onset osteoarthritis.

Source: Participating patient organizations visible below

Alkaptonuria (AKU) Resources

More members stories

Latest Member Stories

What is wrong with me?

by ElinFiona published 1 day ago
One comment

Have you ever felt a vacuum moving through your arms and legs, like your inner skin are ripped off? This happened to me January 2016. It was extrem...

Doctors hardly ever want to help.

by manuela published about 1 month ago
3 comments

There are 7 children in my family and only 3 of us are suffering from this disease. I am the oldest, at present I am 41 years old, and I believe th...

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.