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.’
On Saturday 18th March our Admin & Events Officer Robin took part in the Findacure (https://.. ...more
It’s now only 2 weeks until Rare Disease Day! On the last day of February every year, coun.. ...more
The AKU Society is excited to announce that our 2016 Annual Review is now available for.. ...more
March 5th is the date of the Cambridge Half Marathon. We have 9 runners taking part and in this .. ...more
On 18th February the AKU Society will be taking part in the Findacure Cambridge Firewalk! Firewa.. ...more