A massive £2,500 raised for a patient to attend the NIH
Friday, October 26, 2012 £2,500 to help Simon Laxon Coventry Telegraph features an article about Simon Laxon and his trip to the NIH in Washington. S [...]
An interview from ITV News into the opening of the National Alkaptonuria Centre and the symptoms of AKU
Friday, October 26, 2012 "It's like walking around with chain-mail on all day." Andy Bonner, from ITV News, speaks to Bob Gregory and Dr Ranganath La [...]
The 2011 campaign to raise £5 million for the European drug trials
Thursday, November 08, 2012 Simon Laxon spoke to the Coventry Telegraph about his continued support for a campaign to raise £5million, in order to fu [...]
£500,000 won to fight Black Bone Disease
Thursday, November 08, 2012 Bob Gregory speaks of his delight in the Liverpool Daily Post. In 2008, the Royal Liverpool University Hospital was award [...]
Two AKU Patients from the US and their stories
Thursday, November 08, 2012 “It’s a cartilage degeneration disease really. It’s like a sponge in the sink; it’s real good for a real long time, and t [...]
One man’s fight to save his sons from a rare and debilitating disease
Wednesday, September 11, 2013 Dr Nicolas Sireau, a social entrepreneur whose two sons have alkaptonuria (AKU), a rare genetic disease, has launched a [...]
Patient group crowdfunds $120,000 for trial to treat Black Bone Disease
Thursday, October 31, 2013 Cambridge, UK, 31 October 2013 - A patient group has used the crowdfunding website Indiegogo to raise $120,000 to launch a [...]
A New National Day for World’s First Genetic Disease
Monday, November 25, 2013 CAMBRIDGE, UK: Monday 25 November marks the first Black Bone Disease Day, to raise awareness of the world’s first genetic d [...]
“Father desperate to save his sons from horrific Black Bone Disease launches clinical trial to try and find a treatment”
Thursday, April 03, 2014 "We are really excited that the trial is about to start because there has been so much work to get to this point. We are als [...]
“Father works to Prevent Black Bone Disease”
Thursday, April 10, 2014 On Tuesday 8th April 2014 ITV Anglia ran a televised report on the AKU Society and its upcoming clinical trials. The piece i [...]