Patient Communities


Rare disease patients often report feeling lonely and isolated due to the lack of awareness and understanding surrounding their disease. Patients are sparsely located all over the world and it can be difficult to identify and connect with one another. This is why we work hard to bring patients together. One way of doing this is through our online communities, where users can connect with other patients, share experiences, discuss symptoms and support one another. 

Our AKU specialist communities provide a secure environment where those affected by AKU can discuss their problems and track the progression of their diseases. These communities are set up and moderated by patient advocates, ourselves, and dedicated teams with knowledge of AKU. They are more private than Facebook and Twitter, meaning you can feel comfortable discussing any problems without having to worry about it being seen by those you don’t want it to.

‘I have really appreciated getting to know, and having contact with, other people who have AKU. It makes such a difference having other people to talk to who are going through the same thing. We can share our problems and success.’




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AKU Blog

Hannah Shepherd's Everest Story
15-Nov-2017

Here at the AKU Society we are very lucky to have so many talented and dedicated people working .. ...more

Introducing Reece: Admin and Communications Officer
07-Nov-2017

Last week we welcomed Reece to the AKU Society’s team in Cambridge. As Admin and Commu.. ...more

A Patient's Perspective: Best Practice 2017
03-Nov-2017

On 18th and 19th October, Lesley, our Patient Support Manager, and Carol, one of our AKU pat.. ...more

Meet Leanne Evans, the NAC's new Data Coordinator
25-Oct-2017

Last Month the National Alkaptonuria Centres' new data controller, Leanne joined the NAC team. H.. ...more

A Step for a Step…Everest Base Camp Climb!
12-Oct-2017

So, me (Hannah from the gait lab) and my friend Steven have decided to take on the .. ...more