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

AKU Society's Sixth Patient Workshop
22-Mar-2017

Our Sixth Patient Workshop took place on Saturday. Held at Alexandra Palace it was a great venue tha.. ...more

London Marathon 2017 - Meet the Runner
15-Mar-2017

The London Marathon is one of the most prestigious running events in the world. This year we are.. ...more

Rare Disease Day 2017
10-Mar-2017

Every year people from all over the word come together to celebrate Rare Disease Day. A day designed.. ...more

Cambridge Half Marathon 2017
06-Mar-2017

The AKU Society had seven places in this year’s Cambridge Half Marathon. With each of.. ...more

Findacure DareforRare Firewalk
22-Feb-2017

On Saturday 18th March our Admin & Events Officer Robin took part in the Findacure (https://.. ...more