Welcome to Cystinosis Network Europe

What does CNE do?

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

Cystinosis Support Network Europe is an umbrella grouping of patient support, advocacy and research organisations in Europe and beyond.  The group originally came together informally to provide peer support and to support the hosting of a family and research conference every two years in Europe.  In the last two years the network has become more active and taken a leadership role in various contacts with researchers and members of the healthcare industry developing therapies and treatments for cystinosis.  In 2019 the group decided to formalise and seek to establish itself as a registered charity.

The CNE International Cystinosis Conference

Save the date Leuven CNE ICC 2022

The 2022 CNE International Conference will take place on 7-10 July, in Leuven Belgium.  We look forward to our friends and colleagues joining us for the scientific meeting on 7 July and the family conference from 8-10 July.  Covid protocols will be carefully monitored and adhered to and we will update as details for the event are confirmed.

In 2020 we went virtual!  You can see details here.

Cystinosis Community Advisory Board

You can find details of the Community Advisory Board here.

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

Tel. +353 1 687 5758


Cystinosis Network Europe is pleased to be supported by Chiesi through an unrestricted grant for educational purposes and by Chiesi and AVROBIO for engagement through the Community Advisory Board process.

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