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

Scientists for a Day: AKU Outreach in Italy
18-Apr-2018

The University of Siena (https://en.unisi.it/) is a valued member of DevelopAKUre (http://ww.. ...more

Findacure: Communication and Rare Diseases
11-Apr-2018

There are over 7,000 identified rare diseases. Eighty per cent of them are genetic, like AKU.. ...more

SHCA: Our Voice
04-Apr-2018

On 21st March, Reece Edmends, our Admin and Communications Officer, went to a meeting of the.. ...more

Publicising our Work: Nick Sireau
27-Mar-2018

Dr. Nick Sireau is CEO of the AKU Society and Chair of Trustees. After his two sons were.. ...more

Brexit and AKU
14-Mar-2018

In 2019, the AKU Society’s international clinical trial, DevelopAKUre (http://www.developa.. ...more