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

Meet the patient - Simon Laxon
18-Apr-2019

Today’s blog is written by AKU patient Simon Laxon. In it, he writes about .. ...more

Stand Up To AKU 2019!
12-Apr-2019

We are excited to announce that our Stand up to AKU Comedy Night is back! This year we are h.. ...more

Luton Health Awareness Event
05-Apr-2019

On Tuesday the 26th of March, our Patient Support Manager, Lesley, and Fundraising Officer, .. ...more

EURORDIS Winter School 2019
29-Mar-2019

In today's blog, CEO and Chair Nick Sireau tells us about his recent trip to Paris for t.. ...more

Rare Disease Day 2019
14-Mar-2019

Rare Disease Day is an international day designed to raise awareness to the public and those.. ...more