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

DevelopAKUre SONIA 2 - Update
12-Dec-2018

We are happy to announce that two of our three SONIA 2 trial sites have now finished seeing patie.. ...more

Garrod Day Coffee Morning 2018 - On The Day
28-Nov-2018

Yesterday was the annual Garrod Day Coffee Morning. We celebrated Sir Archibald Garrod&.. ...more

Sir Archibald Garrod and Garrod Day 2018
01-Nov-2018

Garrod Day is quickly approaching. It’s a very important day in the history of alkapto.. ...more

October at the AKU Society
25-Oct-2018

The AKU Society has had a hectic month. In today’s blog, we hear about what each team .. ...more

Stand Up For AKU Comedy Night Spectacular!
10-Oct-2018

Last week we held our third annual Stand Up for AKU Comedy Night in Cambridge, at the snug a.. ...more