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.

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! 

For more Details and registration visit 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.



EURODIS Webinar: Patient Representatives Involvement in the ERN Evaluation

Exchange of Good Practice webinar

Read more

7e ERKNet-jaarvergadering

De ERKNet Annual Meeting is een evenement waar zorgprofessionals en ePAG's 2 dagen lang nieuwe onderzoeksbenaderingen bespreken, kennis delen en…

Read more

49th Certain/ERKNet Workshop

Interdisciplinary Study Group Renal Transplantation in Paediatrics


Read more

[ONLY IN GERMAN] Familien Nephro Symposium 2023

Das 3. Familien-Nephro-Symposium wird am 13. und 14. Mai 2023 in Heidelberg stattfinden! - Anmeldeschluss ist am 15. April 2023!

Read more

51. årsmøde i den europæiske arbejdsgruppe om psykosociale aspekter af børn med kronisk nyresvigt (EWOPA)

EWOPA er en tværfaglig gruppe, der er interesseret i psykosocial behandling af børn og unge med kronisk nyresygdom (CKD). CKD hos børn er en sjælden…

Read more

[ONLY IN GERMAN] Patiententag für aHUS und C3-Glomerulopathie/MPGN 2023

Das Patiententag für aHUS und C3-Glomerulopathie/MPGN wird am 23. September 2023 in Heidelberg stattfinden! - Anmeldeschluss ist am 30.06.2023.

Read more

[ONLY IN SPANISH] 53 Congreso de la Sociedad Española de Nefrología

Descubra el futuro de la nefrología en el corazón de Palma de Mallorca, del 11 al 13 de noviembre!

Read more

[ONLY IN GERMAN] Wenn es um die Nieren geht

Infotag zum nephrotischen Syndrom

Read more

ERKNet/EURORDIS Webinar: "Patient Involvement in Guidelines" by Matt Johnson

We invite you to attend an insightful webinar delivered by Matt Bolz-Johnson, focusing on patient engagement in guideline development.

Read more

7th International Workshop on Alport Syndrome

This workshop will spotlight the latest developments in Alport Syndrome.

Read more