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.

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

AKU ATTENDS RHEUMATOLOGY CONFERENCE

The Alkaptonuria Information Centre exhibited at the British Society for Rheumatology Annual Conference in Liverpool to raise awareness about Alkaptonuria amongst Rheumatology professionals and to possibly identify new patients. 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... 

 AKU ATTENDS FIRST RARE DISEASE DAY

The AKU Society was present at Europe’s first Rare Disease Day on 29 February 2008. Over 150 patients from across the country travelled to Westminster to meet parliamentarians face to face to raise the awareness of the needs of patients with rare diseases and to discuss policy developments at a UK and European level. Read more here.

       THE FIRST EVER MEETING OF AKU PATIENTS AND DOCTORS

The first ever meeting of AKU patients and doctors took place in Liverpool in December. It was a fantastic occasion and provided an opportunity to speak to world leaders in medicine about the latest research into AKU. More than 45 people attended, of which 16 were AKU patients - the first time so many had gathered in the same place - along with six doctors from the Royal Liverpool University Hospital, with which the AKU Society has a long-standing partnership. Download the report of the event.

      WE'VE JUST LAUNCHED OUR FIRST PHD PROJECT

We're really pleased to say that we are just starting our first PhD project, at the Royal Liverpool University Hospital. Adam Taylor is the doctoral student who is carrying it out. Following a gap year in North America Adam went on to study anatomy and human biology at The University of Liverpool and graduated from the course in July 2007 with a high upper second class honours degree. During his honours year Adam undertook a practical dissertation project on AKU looking at "The binding of homogentisic acid to the extracellular matrix in cultures of human chondrocytes and osteosarcoma cells", under the supervision of Professor Jim Gallagher. The project gave promising results. To read more...


      THE GREAT CUMBRIAN RUN ADOPTS THE AKU SOCIETY

We are extremely fortunate that the Great Cumbrian Run has adopted the AKU Society as one of its chosen charities for 2007. This is a key sporting event, with numerous people running the race to raise much-needed funds for the AKU Society.

AKU Society Chairman Dr Nick Sireau praised the run's organiser Mike James for his help. Nick said: “What we’ve done over the past few years is to get families involved. And a lot of our families do sponsored runs, fundraising events. When Mike heard about this, he realised that a good thing he could do was actually to get it involved with the Cumbrian Run and to raise funds that way, so we’re extremely grateful for what he’s done.”

If you'd like to run for the AKU Society at the Great Cumbrian Run, download this form. To find out more go to http://www.newsandstar.co.uk/cumbrianrun/


      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: