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!


 



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AKU Blog

RCN Congress May 2019
14-Jun-2019

The Royal College of Nursing (https://www.rcn.org.uk/) (RCN) Congress is the biggest event o.. ...more

AKU Society Brazil - Flavia at the NIH
07-Jun-2019

Today’s blog is written by the head of the Brazilian AKU Society (https://www.akubrasi.. ...more

RE(ACT) Congress America 2019 - Toronto
24-May-2019

This week's blog is written by AKU Society CEO Nick Sireau. Rare disease research has grown .. ...more

Donating to us via Facebook
03-May-2019

Exciting news, the AKU Society now accepts Facebook Donations. With 1.8 billion people o.. ...more

Stand Up to AKU Comedy Night 2019 - Raffle Prizes!
25-Apr-2019

Our annual ‘Stand Up to AKU’ night is rapidly approaching and here at the AKU So.. ...more