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

Final meeting of DevelopAKUre and the 11th Scientific workshop on AKU – Siena 2019
15-Feb-2019

The AKU Society has just come back from a hectic week in the beautiful Italian city of Siena.. ...more

SONIA 2 - Last patients
22-Jan-2019

On the 18th January, the last SONIA 2 (Suitability of Nitisinone In Alkaptonuria 2) patients.. ...more

Looking forward to 2019
11-Jan-2019

Now we are all settled in after Christmas and the New Year, here at the AKU Society we would like.. ...more

2018 In Review
04-Jan-2019

A Happy New Year from Everyone at the AKU Society. Now that 2018 is well and truly behin.. ...more

DevelopAKUre SONIA 2 - Update
12-Dec-2018

We are happy to announce that two of our three SONIA 2 trial sites have now finished seeing patie.. ...more