Alkaptonuria (AKU)

The AKU Society is a UK patient group offering support and advice to patients diagnosed with the world’s first genetic disease, alkaptonuria (also known as AKU or Black Bone Disease). AKU is a monogentic disease, affecting bone and cartilage, leading to severe early-onset osteoarthritis. The AKU Society is primarily a patient support group but do work with research teams to develop new treatments including in gene and cell therapies. They are currently involved in the DevelopAKUre clinical trials, which are investigating an enzyme inhibitor called nitisinone as a possible treatment for AKU.

Contact: Oliver Timmis (oliver@akusociety.org)
Phone: +44 (0)1223 322897
Website: www.akusociety.org  and www.developAKUre.eu
Address: AKU Society, 66 Devonshire Road, Cambridge, CB1 2BL