RareConnect




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!


 



AKU Twitter

AKU Blog

Meet the patient - Simon Laxon
18-Apr-2019

Today’s blog is written by AKU patient Simon Laxon. In it, he writes about .. ...more

Stand Up To AKU 2019!
12-Apr-2019

We are excited to announce that our Stand up to AKU Comedy Night is back! This year we are h.. ...more

Luton Health Awareness Event
05-Apr-2019

On Tuesday the 26th of March, our Patient Support Manager, Lesley, and Fundraising Officer, .. ...more

EURORDIS Winter School 2019
29-Mar-2019

In today's blog, CEO and Chair Nick Sireau tells us about his recent trip to Paris for t.. ...more

Rare Disease Day 2019
14-Mar-2019

Rare Disease Day is an international day designed to raise awareness to the public and those.. ...more