We'll keep the Twitter feed going (https://twitter.com/#!/findAKUre) if you want to keep up-to-date. This is an exciting time with the new National AKU Service to be launched in Liverpool in June, and plans going ahead for an international Clinical Trial of nitisinone.

Simon Laxon explains what it's really like to live with AKU, how it's changed his life and what hope he has for the future. There's even a quote from our fantastic medical director, Dr Ranganath.

You can read the interview in the Daily Express (on page 50), or online, at I'm only 45 but have the body of a 90-year-old. It's definitely recommended reading for anyone keen to know more about AKU.

We'd like to raise the profile of AKU, with more media interviews and stories about the good work in finding a cure for the disease. Therefore, we encourage anyone interested (AKU patients, family, doctors, or reporters) to get in contact with Communications Manager, Oliver Timmis at oliver@akusociety.org to discuss how to help.

You can find more past AKU stories at our archive: AKU in the News.

You can read the blog at "A disappointing consultation on the UK plan for rare diseases" and it's copied below in full:

__

I’ve just been reading through the consultation document for the UK plan on rare diseases. Sadly, it’s disappointing.

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

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

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 (

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.

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

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

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