The National Alkaptonuria Centre



For many people suffering with alkaptonuria (AKU), they have had difficulties finding access to 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 of detecting 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 who has AKU has access to a knowledgeable team of specialists who can manage their care efficiently.

The National AKU Centre is a free service in Liverpool funded by the Department of Health, 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 the disease, including a physiotherapist and dieticians advice

Nitisinone is a drug currently licensed for another rare disease and it is thought to be effective in treating patients with AKU. All patients who attend the National AKU Centre are given access to nitisinone.

If you would like to know more about the National Alkaptonuria Centre, please contact Lesley Harrison by emailing her at [email protected] or giving her a call on 07586759028

You can also download our leaflet on the National Alkaptonuria Centre.  

 

 

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