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 | Feb 21, 2018 | Uncategorized
The AKU Society is thrilled to introduce you to Jamie Rumbelow. Jamie is running the Edinburgh Half Marathon, part of Edinburgh’s annual Marathon Festival, on 27th May to raise money for us.Jamie lives in the beautiful Scottish town of St. Andrews. He is studying for...
by AKU | Feb 14, 2018 | Uncategorized
Dr. Milad Khedr is a doctor at Royal Liverpool and Broadgreen University Hospitals. He is studying the effect of nitisinone on the tyrosine levels of AKU patients. Here, we ask him about his work. 1) What is the purpose of this study? Alkaptonuria (AKU) means that the...
