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.’




AKU Twitter

AKU Blog

Duncan's Decade on Nitisinone
15-Aug-2018

The newly published results of a study held at the National Alkaptonuria Centre (http://www... ...more

Stand Up for AKU 2018
08-Aug-2018

We’re really excited about our third Stand Up for AKU Comedy Night on 3rd October. Thi.. ...more

New Research Shows Nitisinone Treats AKU
31-Jul-2018

New research has proven for the first time that a drug called nitisinone treats AKU in peopl.. ...more

SOFIA-Paediatric: New Research Study
25-Jul-2018

We have some exciting news. The AKU Society has just been awarded a £60,000 grant .. ...more

Vacancy: Fundraising Officer
18-Jul-2018

We are looking for a Fundraising Officer. The vacancy is up online (http://www.akusociety.org/vac.. ...more