About AKU Society

The AKU Society is the patient organisation for people diagnosed with alkaptonuria (AKU).

AKU is also called black bone disease, as it turns bones black and brittle, causing painful joint disease and early-onset severe osteoarthritis.

In the UK, we've opened a National Alkaptonuria Centre to give patients access to expert care and the first potential treatment, nitisinone. In Europe, we have begun the international clinical trials of the drug nitisinone, aiming to determine if nitisinone can effectively treat AKU.


Profile Activity



Member since:
Aug 3, 2011

Last updated:
Oct 18, 2017

Want to connect to patients like you and get the latest news from AKU Society? Join now!