CNE International Conference

The CNE international conference is hosted every second year and brings together scientists, clinicians, families and adult patients. Attendees from all over the world are welcome.

CNE International Conference

The board of CNE is delighted to announce that the next International CNE conference will be held from 25-27 July 2024 by our the staff in the Cystinosis Foundation UK.  The scientific meeting will be held on 25 July. Families will be welcomed on the evening of July 25th with the family meeting agenda beginning early on July 26th and 27th.  Translation and childcare will be provided for the family meeting so make sure you save the date! 

More details will be announced here as they are confirmed on the Cystinosis Network Europe Website:


The conference consists of high quality research meetings (for professionals only); a family programme and workshops for patients and families. The family programme includes presentations from researchers and clinicians and the opportunity for engagement between researchers, clinicians, patients and families. The workshops provide time for patients and families with similar experiences to meet and connect in closed sessions where appropriate. Our conference provides separate social programs for adult patients, adolescent patients and siblings.

The most recent conference was held in Leuven, Belgium, in July 2022 and was a wonderful opportunity to meet again following the Covid pandemic. 

Past Insights

In 2020, when the world locked down, the CNE International conference went online and reached 600 members of our community globally. We continue this important outreach by having live translation at the meeting, usually including: Dutch, English, French, German, Italian, Spanish, Turkish and Russian. 

Visit the Cystinosis Website for insights of the past meeting and sessions from the 2020 conference.