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Welcome from the AKU Society

The AKU Society is a patient organisation founded in 2003 in Liverpool, UK. We support patients diagnosed with a rare genetic disease, Alkaptonuria (AKU).

AKU was the first genetic disease, first described by Sir Archibald Garrod in 1902. Over 100 years later there is still no cure and patients receive little help to cope with its effects. The AKU Society aims to change this by promoting awareness of AKU and funding research to understand and treat the disease.

Our website is split into sections, so are you:

A Patient with AKU?

A Researcher interested in AKU?

A Medical Professional treating patients with AKU?

A Potential Funder?

Media?


Rare Disease Day 2012

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 - Royal Holloway, University of London Oliver Timmis, AKU Society Communications Manag [...]

Posted by Oliver • 43 days ago • View comments

Bone and Joint Centre, Liverpool

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 Univ [...]

Posted by Oliver • 44 days ago • View comments

Press Release: 18 November 2011

Campaign launched to find a cure for rare disease linked to osteoarthritis 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 [...]

Posted by Oliver • 64 days ago • View comments

Success at the 5th International Workshop on AKU

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; ...... [...]

Posted by Oliver • 66 days ago • View comments

Campaign for a Phase III clinical trail

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 toward [...]

Posted by Oliver • 79 days ago • View comments

Do we need to rebrand rare diseases?

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 [...]

Posted by Nick • 3 months ago • View comments

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