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

RCN Congress 2017
25-May-2017

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

The Information Standard
17-May-2017

The AKU Society is excited to announce that we are now accredited members of the Information Sta.. ...more

Engaging Your Community For Fundraising
10-May-2017

On April 28th our Admin & Events Officer Robin gave a presentation on local com.. ...more

London Marathon 2017
05-May-2017

On 23rd April Joe England successfully completed the London Marathon on behalf of the AKU Societ.. ...more

UK Genetic Disorders Leadership Symposium
29-Mar-2017

On Friday 10th and Saturday 11th March Lesley attended the 3rd UK G.. ...more