by AKU | Aug 5, 2015 | Uncategorized
In June we held our 5th Patient Workshop at London Zoo. As I’m sure those of you who attended can recall, the day included a chair-based exercise session. Following the success of the workshop, Hannah, our Patient Support Manager, recently attended a four day course...
by AKU | Jul 29, 2015 | Uncategorized
2 weeks ago, we attended the genetic alliance conference, where we celebrated all the work Genetic Alliance UK have achieved over the past 25 years. The director, Alastair Kent started the day with a history of Genetic Alliance. He talked about how much we have...
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 15, 2015 | Uncategorized
Angela is a Masters student at Imperial College in London. She is studying Science Communication, and for her dissertation she has decided to research our very own DevelopAKUre clinical trial. In this week’s blog Angela tells us why she finds our trial so interesting...
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...
