Welcome to Cystinosis Network Europe

The International Cystinosis Conference went online on Saturday 25th April!

1 day – 8 languages – 15 speakers – 20 time zones – 49 countries – 900 registered attendees!  Thank you to all who joined us. The Virtual International Cystinosis Conference was a first for the global cystinosis community


If you would like to watch back any parts of the conference, see what other attendees thought of the day or see the agenda and speaker details, please click here.


What does CNE do?

Curious about CNE and our work? You can download our flyer here for some introductory information.


Eight European organisations come together to support people with cystinosis and promote research and form a network.

We have a number of projects ongoing to support people living with cystinosis and their families; an international conference every two years; and the development of a Community Advisory Board in Cystinosis, with the support of EURORDIS.

Our contact details:
Cystinosis Network Europe
c/o Cystinosis Ireland
1-2 Cavendish Row
Dublin 1

Tel. +353 1 687 5758