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

Stand Up For AKU Comedy Night Spectacular!
10-Oct-2018

Last week we held our third annual Stand Up for AKU Comedy Night in Cambridge, at the snug a.. ...more

Farewell from Reece
26-Sep-2018

Reece, our Admin and Communications Officer, is leaving our team at the end of this week. He is goin.. ...more

Stand Up for AKU 2018 - Raffle Prizes
19-Sep-2018

Preparations are underway for Stand up for AKU! - our charity comedy night, coming up on.. ...more

Will Writing with McClure
12-Sep-2018

10th-16th September is Remember a Charity (https://www.rememberacharity.org.uk/) Week. Legac.. ...more

Introducing Juliet: Fundraising Officer
05-Sep-2018

In this week’s blog, we meet Juliet, our new Fundraising Officer. Juliet will be invol.. ...more