INTRODUCING THE ALKAPTONURIA INFORMATION CENTRE

We are very pleased to announce that we have established the first Alkaptonuria Information Centre based in the Royal Liverpool University Hospital, Merseyside, UK.  The centre has been established in order to support existing and new Alkaptonuria sufferers and also to promote awareness of AKU amongst the medical profession.

 

The centre is run by Bev Hebden, Project Manager, and Kerry Needs, Administrative Assistant, who are on hand to offer information, support and advice to both carers and patients with Alkaptonuria.

 

The main aim of the centre is to raise awareness of Alkaptonuria to GPs across the UK to ensure they know the symptoms and causes of Alkaptonuria so they are able to effectively diagnose and treat their patients.

 

This will be done through nationwide GP mailing and attending medical conferences and charity events to raise awareness of Alkaptonuria.  In addition, we will be holding fundraising events and also another conference for AKU patients to attend.

The centre also seeks to reduce the isolation felt by many sufferers of AKU by connecting patients with other sufferers who live in their local area.

By acting as a bridge between the medical profession and Alkaptonuria patients, The Alkaptonuria Information Centre intends to identify as many new patients as possible, providing the research team at the University of Liverpool with more opportunities to find a cure.

As the first point of contact for patients, Bev and Kerry encourage you to get in touch if you need any information about Alkaptonuria or would like to inform us about AKU within your family.

The contact details for the centre are:

The Alkaptonuria Information Centre,

Room 2354B, 4th floor Duncan Building,

Royal Liverpool University Hospital

Daulby Street,

Liverpool L69 3GA

telephone: (+44) 0151 706 4387

email: bev@alkaptonuria.info or janet@alkaptonuria.info