The Alkaptonuria Society

Role of the AKU Society

The AKU Society, the charity for AKU patients will be providing additional support alongside the NAC, including:

· Assistance with travel, accommodation and other logistics, working with the hospital’s appointments service and liaising with local services for referrals and co-ordination

· Meeting with patients during the NAC clinics

· Emotional support and care to patients and family, carers both during the NAC clinics and between visits.

· Publicising the existence of the service to local GPs and other medical professionals.

Monitoring and evaluating the NAC from the patient perspective:

The AKU Society will work with the RLUH to review and improve the NAC on an annual basis through patient and clinician surveys and interviews.

Safety Group:

There is a risk management group that includes Royal Liverpool University Hospital (Dr L Ranganath, Dr T Kennedy, Mr Craig Evans and Professor S Vinjamuri) and AKU Society (Dr N Sireau). The NAC will report to the Department of Health annually.

About the AKU Society:

The AKU Society is a charity that supports AKU patients and funds research into finding treatments. Set up in 2003, it has a strong partnership with the Royal Liverpool and Broadgreen University Hospitals NHS Trust. It is also at the centre of a fast growing international network of AKU Societies and research centres spanning Europe, North America, the Middle East and Asia.

The website for the can be found here: The Alkaptonuria Society

About Robert Gregory:

Robert Gregory is an AKU patient and co-founder of the AKU Society along with Dr L Ranganath. When Robert realised that little was being done for AKU patients, he decided to set up the AKU society as the world’s first charity exclusively dedicated to the disease. The National AKU Centre has been named after Robert in recognition of his key role in driving forward the AKU movement.