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.’




AKU Twitter

AKU Blog

Stand Up To AKU Comedy Night - Liverpool 2019
20-Jun-2019

Our ‘Stand Up to AKU’ comedy night was on Sunday the 9th of June at the Hot Wate.. ...more

RCN Congress May 2019
14-Jun-2019

The Royal College of Nursing (https://www.rcn.org.uk/) (RCN) Congress is the biggest event o.. ...more

AKU Society Brazil - Flavia at the NIH
07-Jun-2019

Today’s blog is written by the head of the Brazilian AKU Society (https://www.akubrasi.. ...more

RE(ACT) Congress America 2019 - Toronto
24-May-2019

This week's blog is written by AKU Society CEO Nick Sireau. Rare disease research has grown .. ...more

Donating to us via Facebook
03-May-2019

Exciting news, the AKU Society now accepts Facebook Donations. With 1.8 billion people o.. ...more