RareConnect is an online platform for rare diseases, created by Eurordis (European Rare Disease Organisation) and NORD (National Organisations for Rare Disorders) to help reduce the sense of isolation commonly reported by rare disease patients.
We have our own AKU community on RareConnect where those affected by AKU can connect, share experiences, find information and support each other in a secure, safe environment. The great thing about RareConnect is that there is an option to have your message translated by human translator. This means that you really can connect with people from all over the world!
Signing up will mean meeting and talking to other AKU patients, sharing your stories and experiences and having access to the latest resources. We also post regular updates and run webinars, keeping our community informed on the progress of our projects.
Join now by clicking the button below!
The AKU Society has just come back from a hectic week in the beautiful Italian city of Siena.. ...more
On the 18th January, the last SONIA 2 (Suitability of Nitisinone In Alkaptonuria 2) patients.. ...more
Now we are all settled in after Christmas and the New Year, here at the AKU Society we would like.. ...more
A Happy New Year from Everyone at the AKU Society. Now that 2018 is well and truly behin.. ...more