For Welsh patients with rare diseases, accessing treatment is a challenge. The application process can be complicated, and, in the case of our patients, access to full treatment is not always granted. Last week we hosted a lobby event in partners..Read More >
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’..Read More >
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..Read More >
The AKU Society and Genetic Alliance UK are hosting an even..
We are sad to announce that Robert Gregory, co-founder of the AKU..
We had great fun at our last patient workshop at Alexandra Pa..