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.’
In today’s blog, we hear from Rory and Robin who are both leaving the AKU Society for pastures.. ...more
In this week’s blog, we speak to AKU patient Antony Kelly. Antony has been kind enough to tell.. ...more
Oliver has worked at the AKU Society for the last 7 years, and has been CEO for the last 2. At t.. ...more
On Thursday, June 29th, Robin and Lesley travelled up to Liverpool for the 2017 Stand Up For AK.. ...more