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 Royal College of Nursing (https://www.rcn.org.uk/) (RCN) Congress is the biggest event o.. ...more
Today’s blog is written by the head of the Brazilian AKU Society (https://www.akubrasi.. ...more
This week's blog is written by AKU Society CEO Nick Sireau. Rare disease research has grown .. ...more
Exciting news, the AKU Society now accepts Facebook Donations. With 1.8 billion people o.. ...more
Our annual ‘Stand Up to AKU’ night is rapidly approaching and here at the AKU So.. ...more