by AKU | Apr 22, 2015 | Uncategorized
On Friday 17th April we sponsored the Findacure workshop on the topic of communications and PR for small patient groups. The AKU Society decided to sponsor this event in order to share what we have learnt about communications whilst undertaking our Reaching...
by AKU | Mar 18, 2015 | Uncategorized
On Saturday 7th March Hannah, Eve and Nick attended the 1st Annual Genetic Disorders Leadership Symposium in London. The goal of the symposium was to bring together leaders of UK based genetic disorder charities and other patient advocates to learn from...
by AKU | Mar 4, 2015 | Uncategorized
This year the AKU Society Team had a fantastic time celebrating Rare Disease Day at various different events. In this week’s blog we give a summary of these events, and their Rare Disease Day messages. Parliamentary Reception On Wednesday...
by AKU | Jan 21, 2015 | Uncategorized
On Monday, our Chairman, Nick Sireau, attended the Annual General Meeting for Rare Disease UK. Rare Disease UK is a membership group for rare disease charities. AKU Society is a member, which allows us to help guide Rare Disease UK’s work in lobbying the UK Government...
by AKU | Jan 14, 2015 | Uncategorized
As most of you will know, we launched clinical trials called DevelopAKUre in 2012. These trials are based in three sites around Europe (Liverpool, UK; Paris, France and Piestany, Slovakia) and will assess the drug nitisinone to test whether it is an effective...
