Welcome to the AKU Society Newsfeed. This page lists all the current news from the AKU Society. Brief summaries will appear on the homepage, in the "Latest News" box, and full stories appear here. We've got Oliver writing the AKU news, and links to Nick's blog posts on the role of a patient organisation in treating rare diseases.
Next Wednesday, 29th February, is Rare Disease Day 2012.

Mediaplanet are published a special 16-page supplement nationwide in the The Independent newspaper and we are pleased to announce that it will include a half-page ad for the AKU Society.

This ad, celebrating out work in moving towards a clinical trial of nitisinone for alkaptonuria, was kindly created pro bono by leading healthcare PR agency, Tudor Reilly. It signifies that the AKU movement is strong, and moving ahead to find a cure for the disease.

You can get a copy of the supplement within The Independent next wednesday, or pick one up at many of the Rare Disease Day events, including at
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This year, Rare Disease Day will take place on 29th February 2012.

The aim of Rare Disease Day is to highlight the need for more research and funding to help sufferers and their families and to draw attention to rare diseases and the millions of people who are affected by them.

I'll be celebrating the day with an AKU Society stand at Royal Holloway University, who is hosting an Rare Disease Day event. The university is a leading institution in the development of novel therapies for rare diseases, including Spinal Muscular Atrophy, Duchenne Muscular Dystrophy, and Severe Combined Immunodeficiency.

Paralympic champion and Royal Holloway alumna Helene Raynsford is the patron for the College’s Rare Disease Day. Helene, who suffers from rare disease Ehlers-Danlos Syndrome, made history by becoming the first woman to win an Olympic gold in the arms-only single sculls for Great Britain. She completed a Biochemistry degree at Royal Holloway in 2003 and is currently studying an MSC in Human Neuroscience.

Helene will be delivering a keynote speech on the da
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Our partners at the University of Liverpool have confirmed 100 new cases of AKU in Vellore, South India.

The cases were brought to their attention by Dr Issac Jebaraj, who attended our 5th International Workshop on AKU, held in Liverpool last November, and spoke about his work identifying and treating alkaptonuria patients in the Romani community.

For us, this is an exciting story, as it means more AKU patients will be able to access information and support that should help them to better cope with the disease. We're especially pleased that the news story has been picked up by several sites internationally, including those in India (Yahoo! India), Malaysia (
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It's been a couple of months since we've had an update in the AKU Newsfeed and for that we are sorry and will start posting news more frequently again.

However, we have been busy preparing and writing an application to the EU Government for 6 million euros - if it's successful we'll be able to fund a clinical trial in a potential new drug, nitisinone. If you want to know about the drug, have a look at the guide "Taking Nitisinone" written by our patient volunteer, Duncan Batty.

Success in the funding would mean the trial will run at three European site - one in the UK, one in France and one in Slovakia. Being spread over three sites will mean that we can contact enough patients to make the study meaningful. To have a chance of the results meaning anything, we'll need to recruit nearly 200 patients over the three sites.
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Rare Disease Day 2012 is on 29 February, the rarest day of the year!

The AKU Society will be attending events in the UK and in Switzerland. 


Rare Disease Day 2012

Oliver Timmis, AKU Society Communications Manager will be present at the Rare Disease Day events at Royal Holloway, University of London. 

The event will have exhibitions from several rare disease organisations (including an AKU stand) in the morning, followed by a series of talks from experts in the afternoon. If you wa
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We are pleased to announce a new partnership with the Bone and Joint Centre - the UK's leading specialist orthopaedic healthcare provider. They are based in Liverpool, where they have good links with our original partners at the Royal Liverpool University Hospital.

Their founder, Mr John Davidson, has attended our last meetings, speaking at the 4th International Workshop on AKU, and taking part in a panel discussion at the 5th International Workshop on AKU.

Mr Davidson has good experience with treating AKU patients, having been involved in many joint replacement operations due to alkaptonuria. He is a key partner in our plans to bid for a National AKU Centre in Liverpool, turning the Royal Liverpool University Hospital into a Centre of Excellence for AKU.

If you have any concerns over a forthcoming AKU joint replacement surgery, Mr Davidison is hap
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Liverpool, UK, 18 November 2011 - A campaigning patient group has today launched a five million-pound appeal to fund a ground-breaking clinical trial to test the drug nitisinone as a potential treatment for alkaptonuria (AKU), commonly known as black bone disease.

Although a rare disease, medical researchers at the AKU Society believe an effective treatment for the condition could also open new lines of inquiry into treating the millions of patients in the UK who suffer from osteoarthritis.

“Anything we can do to understand AKU, which is a severe form of arthritis, will undoubtedly help us to understand other forms of arthritis such as osteoarthritis” said Dr Lakshminarayan Ranganath, Medical Director for the AKU Society. “Osteoarthritis is a highly prevalent disease affecting at least
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We were very happy with the AKU Workshop last week. Over 100 attendees saw 25 speakers talk about the latest work in AKU.


Talks from out basic science teams on the Friday, from across the UK (Universities of Liverpool, Cambridge and Marseilles;

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We are holding the 5th International Workshop on AKU next week (Friday 18 - Saturday 19 November 2011). It hopes to be an exciting event detailing the latest work in AKU.

We're also planning on using it as a launch-pad for our new campaign to move towards a phase III clinical trial of nitisinone in AKU patients.

We believe nitisinone is the best hope for a treatment of AKU, and a successful trial will be the evidence we need to ensure every AKU patient can get access to the drug.

To understand the reasoning behind our support for nitisinone, please check our campaign page: Campaign for a Phase III clinical trial.

More information about our plans will be given at the Workshop. If you cannot attend, watch the website for updates durin
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Here’s a copy of the blog post I just put on Rare Disease Blogs: I came home late from London last night. We’d just had a brainstorm with a group of friends to think about how to build a strong rare disease movement in the UK. As you’ll see from my previous posts, I’m convinced [...]
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