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.
AKU NEWSLETTER 4TH EDITION
The fourth edition of the AKU Newsletter has been published. Inside
you'll find lots of stories from both the UK and abroad, a report from
Nick Sireau about the European Rare Diseases Conference in Krakow and
loads more information. Download the newsletter here.
FOX NEWS ARTICLE ABOUT AKU PATIENTS Fox News in the US has published an article about Alkaptonuria, some US patients and how the AKU Society is working to improve the hope of better treatment. Read the full story at www.foxnews.com/story/0,2933,599123,00.html.
EXPERT PATIENTS PROGRAMME For people with long-term health issues, dealing with it day to day can be challenging. The Expert Patients Programme CIC runs courses to help people living
with any long-term health conditions maintain their health and
improve their quality of life. For more information go to their website www.expertpatients.co.uk or phone 0800 988 5550 for advice. AKU SOCIETY DISCUSSION FORUM We are currently experiencing difficulties with our forum, so please bear with us while we try to fix this. In the meantime, do visit our Facebook group. To access the group, log into Facebook and type Alkaptonuria into the search box.
A STORY OF HOPE A feeling of isolation is one of the many things Alkaptonuria patients have to cope with and the AKU Society is dedicated to improving the awareness of the disease, which will in turn reduce the isolation of sufferers as well as improve the knowledge within the medical profession.
We have produced a video to explain the condition and let sufferers explain in their own words how it affects their lives. Although patients have many problems, there is hope that a cure will be found in the future, so we've called the DVD 'A Story of Hope'.
Please watch the video and send a link to anyone you think might be interested.
THE AKU SOCIETY PATIENT DAY SEPTEMBER 2010
The AKU Society is holding a patient event on Saturday 4 September 2010 at the Liner Hotel, Liverpool, the same venue as the 2008 event. This is a great chance for sufferers and carers to meet each other as well as discuss the disease and its effects with people from the medical profession. Click here for more and to download an itinerary.
AKU COMMUNICATIONS PROJECT MANAGER VACANCY The Alkaptonuria Society is looking for a pro-active Communications Project Manager to communicate the learning from ongoing medical research into Alkaptonuria (AKU for short), the first genetic disorder ever identified.
THE AKU SOCIETY HAS A FACEBOOK GROUP The AKU Society has set up a Facebook group dedicated to providing support and information for Alkaptonuria patients.
To access the group, log into Facebook and type Alkaptonuria into the search box.
MOBILITY SCOOTER INSURANCE A disabled lady in Wales could lose her house in order to raise enough money to pay compensation and costs associated with an accident involving her mobility scooter. See the full BBC story here. In the wake of this, the AKU Society asks if mobility scooter insurance is required. See our Support section for more information.
GIVE US YOUR TEETH FOR AKU RESEARCH
It would be really helpful for our research if we could obtain teeth from children and adults in people with AKU in the UK. Read more here.
PLEASE DONATE AND HELP US KEEP THE AKU INFORMATION CENTRE OPEN The AKU Information Centre opened in January 2008 with Lottery funding. It has so far done a tremendous job raising awareness of Alkaptonuria among doctors and patients. However funding from the Lottery stops in July and we need your help to raise funds to keep this vital service open. Read more here.
LATEST AKU NEWSLETTER PUBLISHED The third edition of the AKU newsletter brings you one patient's story, information about clinical evaluations, a report on the third AKU workshop in Siena, Italy, and more. Download the newsletter here.
3rd AKU WORKSHOP TAKES PLACE IN SIENA, ITALY The third Alkaptonuria workshop took place in the historic Santa Maria Della Scalla in Siena, Italy on 27th October 2009. Read more here.
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.
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...
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.
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.
