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.’
Hi! My name is Maria and I am currently a 2nd-year student at Royal Holloway University of L.. ...more
Today's blog is written by Nick Sireau the Chair and CEO of the AKU Society, It was in.. ...more
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My name is Alev Sen. I’m the main researcher on a study of treatment for AKU in UK hea.. ...more