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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?


On Hiatus

If you're wondering why we haven't updated the blog for a while - we're on hiatus, while we're redesigning the whole website. Look out for the newly designed site soon. We'll keep the Twitter feed going (https://twitter.com/#!/findAKUre) if you want to k [...]

Posted by Oliver • 9 days ago • View comments

I'm only 45 but have the body of a 90-year-old

There's a great interview in today's Daily Express. 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 c [...]

Posted by Oliver • 65 days ago • View comments

Work for Us - Patient Support Officer

The AKU Society is recruiting for a new position, a Patient Support Officer.  Salary:                   £18,000 Status:       & [...]

Posted by Oliver • 70 days ago • View comments

A disappointing consultation on the UK plan for rare diseases

AKU Chairman, Nick Sireau has posted a  new blog over at Rare Disease Blogs. It explains our disappointment with the latest consultation on the UK Rare Disease Plan and gives a few ideas for improvement. You can read the blog at "A disappo [...]

Posted by Oliver • 71 days ago • View comments

Rare Disease Stronger Together

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, [...]

Posted by Oliver • 85 days ago • View comments

Rare we are alone, together we are strong

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 mill [...]

Posted by Oliver • 86 days ago • View comments

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