Scientists for a Day: AKU Outreach in Italy

Scientists for a Day: AKU Outreach in Italy

The University of Siena is a valued member of DevelopAKUre, the international consortium which we put together in 2012 to find a treatment for AKU. Although there are no clinical trial sites in Italy, some of the most important scientific work takes...
Findacure: Communication and Rare Diseases

Findacure: Communication and Rare Diseases

There are over 7,000 identified rare diseases. Eighty per cent of them are genetic, like AKU. Together, they affect 3.5 million people across the United Kingdom. Each individual disease, though, only has a small patient population. Because of...
SHCA: Our Voice

SHCA: Our Voice

On 21st March, Reece Edmends, our Admin and Communications Officer, went to a meeting of the Specialised Healthcare Alliance. It was held in the beautiful setting of the House of Lords. Here, Reece explains why he went and what was said. The NHS works through services...
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...