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.


Cystinosis Community Advisory Board

You can find details of the Community Advisory Board here.

The International Cystinosis Conference

25th April 2020 was a monumental day for cystinosis internationally.  In one day,  15 speakers addressed more than 600 delegates across 20 time zones and 49 countries, and were translated into 8 languages.


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.


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.