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

RCNi eLearning Module
13-Dec-2019

Five years ago, we partnered with the Royal College of GPs (RCGP) to develop an online eLearning.. ...more

AKU Patient Workshop 2019 - Garrod Day Special
05-Dec-2019

In today’s blog, we look at our brilliant patient workshop held in Liverpool on the 25th Novem.. ...more

Eurordis Digital School & RCGP Annual Primary Care Conference 2019
08-Nov-2019

Eurordis Digital School At the start of the month Ciarán our Communications Manager .. ...more

One Month to Go until Garrod Day!
25-Oct-2019

We are only one month away from Garrod Day! On the 25th November, we celebrate the birthday of Si.. ...more

Garrod Day Coffee Morning: Tips for a Successful Coffee Morning
27-Sep-2019

We are busy preparing for our annual Garrod Day Coffee Morning on the 25th of November... ...more