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!
Five years ago, we partnered with the Royal College of GPs (RCGP) to develop an online eLearning.. ...more
In today’s blog, we look at our brilliant patient workshop held in Liverpool on the 25th Novem.. ...more
Eurordis Digital School At the start of the month Ciarán our Communications Manager .. ...more
We are only one month away from Garrod Day! On the 25th November, we celebrate the birthday of Si.. ...more
We are busy preparing for our annual Garrod Day Coffee Morning on the 25th of November... ...more