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.

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! 

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. 

Call for Abstracts

During the scientific meeting on 25th July, a poster session will be held for our scientific and clinical colleagues.  Further poster sessions will be held on 26th and 27th July during the family conference.  These sessions are intended to inform families and those living with cystinosis about current research in the field, to give hope to people dealing with this disease and to give researchers an opportunity to have direct contact with the people they are working for.

To achieve this, it is essential that you as researchers are able to explain the aim of your work in a patient-friendly, layperson way. There will be time scheduled in the agenda to have one-to-one or small group discussions in front of your poster. To be clear: this poster session is not about full-color printing or high-resolution pictures but about explaining your research in a patient friendly way. A selected number of submissions will be invited to present their work to the families during a conference session.  These presentations will be of three minutes duration with two minutes for questions and should be made in lay language.  There will be a prize for the best poster and the best presentation awarded by a vote by the families and those living with cystinosis. 

Guidelines for submission

  • A descriptive title in Bolded Times New Roman 12 point.   
  • The initials and surname of the author(s) without titles or degrees should appear below the title.   
  • The department(s), institution(s) and city(ies)/town(s) should be listed next.   
  • The abstract should be of the informative type containing four paragraphs but without any subtitles or headings:   
  • Specify the purpose of the study and include a brief background statement.   
  • Outline the methods used, for example study design, population, statistical test(s).   
  • Summarise the results of the study and include key statistical data.   
  • Outline the main implication(s) of the study. It is not satisfactory, for example, to state: “results will be discussed”.   
  • The abstract must not exceed 250 words – excluding the title, authors(s) name(s), address(es), and any references.   
  • The text should be single spaced.   
  • The font should be Times New Roman 12 Point.  
  • The abstract may include no more than one table or figure.   
  • When using abbreviations, spell out the full name on first mention. Avoid excessive use of abbreviations.   
  • Up to two references can be included.   
  • Potential conflicts of interest should be disclosed.  
  • If selected, the poster must be in portrait format, 1200mm high x 900mm wide (A0 graphic size)   

Submit your abstract via e-mail to: denise.dunne[at]  

Deadline for abstract submission is 9th April 2024

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.