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

Children's Workshop 2017 Preview
21-Jun-2017

On 26th July we are excited to be holding our first ever Children’s Workshop. This ev.. ...more

A big thank you to Pedwar Pawen Dog Training Club!
14-Jun-2017

Support often comes from unlikely places, but it is safe to say we never expected to receive.. ...more

Presenting National AKU Centre Research at an International Conference
07-Jun-2017

This week’s blog comes from the team at Costello Medical (http://www.costellomedical.com/).. ...more

EURORDIS Membership Meeting 2017, Budapest
31-May-2017

On the 19th- 20th May, Oliver and Ciarán travelled to Budapest to represent the AKU Socie.. ...more

RCN Congress 2017
25-May-2017

The Royal College of Nursing Congress is held each year to bring together over 4,000 nur.. ...more