Alkaptonuria (AKU) is a rare genetic disease caused by a missing enzyme, which means that the body cannot break down a substance known as homogentisic acid. Anyone with Alkaptonuria may suffer from symptoms such as chronic pain in their back or joints. The launch of the AKU Centre in Liverpool is supported by Mr Davidson, a Consultant Orthopaedic Surgeon at the Bone and Joint Centre. Mr Davidson is also the lead surgeon for the National AKU Society.

The world’s first centre for the clinical care of AKU will be launching in Liverpoolon 18 June with its first group of patients. The result of a 24-month preparation process, the National AKU Service will be led by Dr L Ranganath, Medical Director and Co-founder of the AKU Society and Consultant in Metabolic Medicine at the Royal Liverpool University Hospital.

The centre is funded by the NHS National Specialised Services as part of its commitment to the clinical care of patients with ultra rare conditions. The centre will be able to prescribe nitisinone, a very promising drug for the treatment of AKU.

Lesley Harrison, the AKU Society’s new Patient Support Officer, is already organising a monthly schedule of visits for AKU patients to attend the centre. She said: “I’m contacting all AKU patients in England, Scotland, Walesand Northern Ireland about the centre to explain how to access it and then organise visits”. If any patients haven’t been contacted yet, please do get in touch at [email protected].

Lesley trained and worked as a nurse before working as a patient advocate for POhWer, an independent advocacy organisation. She will be the main point of contact with AKU patients, providing them with support and assistance to access the centre inLiverpool. The new AKU patient and nitisinone information booklets will soon be ready for patients visiting the AKU centre. To learn more about this genetic disease click here.