What we do

Cystinosis is a rare disease, but we can make our voice heard and help our families to a better life.

Cystinosis Network Europe has three major projects at the moment.

The first of these is establishing CNE as a formal entity, with a legal structure, governing documents and a structure for how to engage with our community. Cystinosis Ireland is leading on the formation of the company and we will update this page as details are finalised.

Community Advisory Board

Working with EURORDIS (the European Organisation for Rare Disorders) CNE and our international colleagues are working to develop a Community Advisory Board.  This will allow our member organisations to interact in a structured and transparent way with treatment and medication developers to ensure patients are consulted as patient investigators in the development of treatments and therapies that will have an impact on their lives.

CNE International Conference

The CNE International Conference will take place in Dublin from 10-12 July 2020.  Details will be updated here as confirmed.


Our ongoing work will continue to include


  • We are an all volunteer, non-profit organisation
  • We meet on a regular base to exchange and discuss achievements and unsolved problems not only in our own countries
  • We encourage new research projects
  • We connect patient groups and researchers networks


  • We help families all over Europe to get contact with other families and clinics.
  • We inform patients and parents properly and continuously about their condition and what is going on in the “world of Cystinosis”.
  • We support patients’ and researchers’ projects (e.g. the development of international guidelines for treating cystinosis.
  • We are an active part in the search for one or more good forms of transition for teens and young adults.