What we do

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

CNE International Conference

The CNE hosts an international conference every two years.  In 2022 the conference will be held in Leuven, Belgium from 7-10 July.

In 2020 we went virtual!  You can see details here

Community Advisory Board

Based on the EuroCAB principles developed by EURORDIS (the European Organisation for Rare Disorders), CSNE 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.  You can find out more here.

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.