by AKU | Mar 27, 2018 | Uncategorized
Dr. Nick Sireau is CEO of the AKU Society and Chair of Trustees. After his two sons were diagnosed with AKU, Nick became a trustee in 2003. He served first as CEO from 2010-2015 but returned to his old job in 2017 after a period at AstraZeneca. It is...
by AKU | Mar 14, 2018 | Uncategorized
In 2019, the AKU Society’s international clinical trial, DevelopAKUre, will end. We hope that it will prove that the drug nitisinone is an effective treatment for AKU. If this happens, we will apply to a body called the European Medicines Agency (EMA) for ‘marketing...
by AKU | Mar 7, 2018 | Uncategorized
On Wednesday February 28th the world marked Rare Disease Day. This annual event was set up by EURORDIS, a European alliance of rare disease patient groups, in 2008, to meet a pressing need. There were lots of days representing sufferers of specific...
by AKU | Jan 25, 2018 | Uncategorized
In this week’s blog, we hear about Bob Montague, who went to the National Alkaptonuria Centre (NAC) for the first time this January. Now 70 years old, Bob read law at the London School of Economics, after which he went to work as a solicitor for a major...
by AKU | Jan 3, 2018 | Uncategorized
We at the AKU Society would like to wish everyone a very happy New Year. As 2018 starts, we’d like to give you a preview of what’s in store for this year. On 23rd – 24th April, we will be holding our second International Patient Workshop at the Bluecoat in...
