Publicising our Work: Nick Sireau

Publicising our Work: Nick Sireau

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...
Brexit and AKU

Brexit and AKU

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...
Rare Disease Day 2018

Rare Disease Day 2018

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...