Many people diagnosed with alkaptonuria (AKU) have difficulty accessing efficient and effective care to treat their AKU. For some, there has been a lack of local expertise and knowledge when dealing with such a rare disease, resulting in the failure to detect complications of AKU and an inability to make appropriate treatments available.
The Robert Gregory National Alkaptonuria Centre exists to change this. It is needed to ensure that everyone with AKU has access to a knowledgeable team of specialists who can manage their care efficiently.
The National AKU Centre was established by the Department of Health (National Specialised Services Commissioning Group) and opened to patients on 18th June 2012. The service was set up to provide assessments and treatment for people with AKU and is based at The Royal Liverpool University Hospital. It is a free NHS service open to anyone over the age of 16 who has been diagnosed with AKU and living in England or Scotland.
Patients who attend the National AKU Centre will receive:
- A full health assessment and treatment of AKU
- Access to the drug nitisinone
- Advice on living with and managing the disease.