WELCOME TO THE ALKAPTONURIA SOCIETY WEBSITE

Our aim is simple - to create an information and support network for those people diagnosed with the condition. Our job is to find the latest news, research and treatments and provide you with the best information we can. But remember, this is your website and we hope you will share your news and experiences.

EU HEALTH MINISTERS TACKLE RARE DISEASES
EU member states are to develop and implement plans or strategies for the treatment of rare diseases. Read more here.

BLUE BADGE HOLDERS - UPDATED UK ROAD ATLAS AVAILABLE
An update edition of the UK road atlas for Blue Badge Holders is now available. The 256-page atlas shows Blue Badge parking bays and accessible services across the UK and more. Read more here.

LATEST AKU NEWSLETTER PUBLISHED
The second edition of the AKU newsletter reveals the results of a questionnaire sent by the AKU Society to 16,000 GPs, a round-up of the Patient Weekend in November 2008, and more.
Download newsletter here.

RARE DISEASE UK CALLS FOR NATIONAL TREATMENT PLAN
Rare Disease UK has called on the Department of Health to move forward with EU proposals to develop a national plan for the treatment of rare diseases. Read more here.

PLEASE DONATE TISSUE SAMPLES TO HELP OUR RESEARCH
If you suffer from AKU and will be undergoing surgery, including joint replacement or arthroscopy, you can help our research by donating tissue samples obtained during surgery.

And if you would like to consider donating your body after death to help the Department of Human Anatomy & Cell Biology at Liverpool University and the AKU Society in their research, we can provide information and contact details. Read more here.

SECOND ANNUAL AKU MEDICAL CONFERENCE NEWS
The second annual AKU medical conference and patient-doctors event took place last November. Read a full report here.

LOTTERY TO FUND RESEARCH INTO AKU
The Big Lottery Fund has awarded almost £500,000 to the Alkaptonuria Society to work with scientists at the University of Liverpool to develop a treatment for the rare, genetic disease Alkaptonuria (AKU for short), and to educate doctors, policy makers and health professionals about the illness. Read more here.


RARE DISEASE UK AIMS TO IMPROVE HEALTHCARE FOR PEOPLE WITH RARE DISEASE
It can be difficult for patients with rare diseases to get access to healthcare services. Rare Disease UK, launched on 7 November, aims to address this and achieve high-quality healthcare for patients and families living with these diseases. Read more here.


MAJOR AKU FUNDRAISING ACHIEVEMENTS BY OUR TOP CYCLIST VOLUNTEERS
Cyclists raise funds for the AKU. Read more here


WAYS TO DONATE TO THE ALKAPTONURIA SOCIETY
We now have new ways to donate to the AKU Society! Read more here.

DISCUSSION FORUM LAUNCHES

Get to know other AKU sufferers, carers and other visitors to this site on our new Discussion Forum. Click here to enter the forum.

NEW SUPPORT SECTION LAUNCHES ON AKU WEBSITE

We have added a Support section to the website. Read more here. To get to the Support page click here or on the Support button at the top of this page.

LATEST AKU NEWSLETTER PUBLISHED

Download our latest newsletter here

UPDATE ON ROBERT GREGORY, FOUNDER OF THE ALKAPTONURIA SOCIETY

As some of you may know, our manager and founder of the Alkaptonuria Society Bob Gregory unfortunately suffered a stroke at the end of April.
We are extremely pleased to report Bob is now back home and is recovering exceptionally well... Read More

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, 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. Read more... 


WATCH THE AKU SOCIETY'S LATEST VIDEO

Click here to download it (16MB file).


SCIENTISTS TACKLE TREATMENT FOR WORLD'S FIRST KNOWN GENETIC DISEASE

Scientists are finally tackling a genetic disease first discovered more than a century ago, according to results presented at the international Alkaptonuria (AKU) Society conference held at University College London Hospital on Wednesday 13 June 2007.

World medical experts heard from US genetic specialist Dr William Gahl who presented data from trials of a potential treatment, Nitisinone. They also heard from the AKU Society’s research team at the Royal Liverpool University Hospital, which is exploring avenues for genetic therapy.

AKU is a progressive, inherited condition that affects up to 250 people in the UK. Genetic mutations in these people cause malfunction of a single enzyme involved in breakdown of tyrosine, an amino acid “building block” of protein. This malfunction causes dangerous accumulation of the pigment ‘homogentisic acid’ throughout the body. The pigment build-up causes serious complications for patients, including arthritis of the spine and large joints and heart problems.

Read more...


Other news...

Do you live in the UK and are you having an operation because of your Alkaptonuria?

If so, please contact us. The Alkaptonuria Society is funding research at the Royal Liverpool University Hospital and we need to collect tissue from people with Alkaptonuria undergoing surgery. This is vitally important for research into the causes of Alkaptonuria.

If you are undergoing surgery in the UK, please contact nick@alkaptonuria.info


      THE ALKAPTONURIA SOCIETY HAS PUBLISHED A NEW BROCHURE ABOUT AKU

Please click to download: