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

Meet Maria - AKU Society Student Placement
23-Aug-2019

Hi! My name is Maria and I am currently a 2nd-year student at Royal Holloway University of L.. ...more

DevelopAKUre - A History
02-Aug-2019

Today's blog is written by Nick Sireau the Chair and CEO of the AKU Society, It was in.. ...more

SONIA 2 and DevelopAKUre - Results
23-Jul-2019

We are delighted to announce that all the data from the SONIA 2 clin.. ...more

Sociological Study on Treatment for AKU in the UK
19-Jul-2019

My name is Alev Sen. I’m the main researcher on a study of treatment for AKU in UK hea.. ...more

Other Ways to Give to the AKU Society
04-Jul-2019

In this week’s blog, we explain how you can donate to the AKU Society through mobile g.. ...more