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

A Tyrosine Study with Dr. Milad Khedr
14-Feb-2018

Dr. Milad Khedr is a doctor at Royal Liverpool and Broadgreen University Hospitals. He is st.. ...more

Browsealoud - A New Accessible Tool For Our Website.
07-Feb-2018

To make our website more accessible to visitors with different needs, the AKU Society has in.. ...more

Meet the Patient - Bob Montague
25-Jan-2018

In this week’s blog, we hear about Bob Montague, who went to the National Alkaptonuria.. ...more

Two Months (and Three Events) with the AKU Society
16-Jan-2018

In December 2017, Reece Edmends, the AKU Society’s newly appointed Admin and Communication.. ...more

A Look at 2018
03-Jan-2018

We at the AKU Society would like to wish everyone a very happy New Year. As 2018 starts.. ...more