by AKU | Jul 22, 2015 | Uncategorized
The SHCA is a coalition of patient related groups and corporate members with a strong record of campaigning on behalf of people with rare and complex conditions in need of specialised care. They usually meet quarterly, but this month they held two additional events...
by AKU | Jul 8, 2015 | Uncategorized
On the 1st July we made our way to the Royal College of Surgeons in London for the Patient Information Forum’s (PiF) Annual Conference. This year the focus was around turning rhetoric in to reality by empowering patients through information and support. It was also...
by AKU | Jul 1, 2015 | Uncategorized
We are currently promoting a survey which aims to discover how we can improve our resources and services for everyone. We also want to find out about the quality of life our patients experience, and how our services impact on this. In this week’s blog we explain why...
by AKU | Jun 24, 2015 | Uncategorized
Our fifth patient workshop took place at London Zoo on Saturday. It was a great opportunity for patients, family members and friends to meet one another, share experiences and learn more about AKU. The day started off with an hour’s zoo time, where everyone got the...
by AKU | Jun 17, 2015 | Uncategorized
Last week was a busy one, with not one, but two events focusing on how pharmaceutical companies and patient groups can work together to create better research. On Monday and Tuesday, Oliver attended EyeForPharma’s conference: “Patient-Centric Clinical Trials”. On...
