by AKU | May 2, 2018 | Uncategorized
April 23rd, 2018 was St. George’s Day. For us, though, it was the start of our second International Patient Workshop. This brought together 89 people – AKU patients, supporters, researchers and staff – from around the world to network and share advice. Patients came...
by AKU | Apr 18, 2018 | Uncategorized
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...
by AKU | Apr 11, 2018 | Uncategorized
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...
by AKU | Apr 4, 2018 | Uncategorized
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...
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...
