3rd CNE International Cystinosis Conference 2022

Friday 8th of July – Day 1

08:30-08:45 – Opening by Anne-Marie O’Dowd, Claudia Sproedt, Elena Levtchenko


08:45-09:15 – Kick-off: What do you know about cystinosis?


09:15-09:45 – Overview of cystinosis treatment in 2022 by Elena Levtchenko


10:15-11:15 – Bring good treatment for cystinosis patients around the Globe:
1- Rezan Topaloglu
2 – Soenke & Markus
3 – Victor Gomez
4 – Aurélia Bertholet Thomas & Aude Servais
5 – Gail Daniels
6 – Jonathan Dicks
7 – Alexey Tsygin
8 – Irati


11:45-12:00 – Monitoring of cysteamine treatment: laboratory perspective by Sandrine Marie


12:00-12:30 – Monitoring of cysteamine treatment: physician perspective by Marlies Cornelissen


12:30-12:45 – Q&A Monitoring of cysteamine treatment


13:45-14:15 – Overview of cystinosis research by Francesco Emma


14:15-14:45 – New and improved medication for cystinosis: cysteamine prodrug by Herbie Newell


14:45-15:15 – Long-term follow-up of nephropathic cystinosis: importance of international registries by Aude Servais


15:15-15:45 – Medications after kidney transplantation and improved treatment of infections by Paul Grimm


16:45-17:15 – Neurocognitive functioning in cystinosis patients by John J. Foxe

Saturday 9th of July – Day 2

08:30-09:00 – Bone disease in cystinosis including surgery by Dieter Haffner



09:00-09:30 – Muscle disease in cystinosis by Pascal Laforêt

09:30-09:45 – How to improve muscle function in cystinosis: IMPACT study by Christian Koeppl

09:45-10:15 – Eye complications in cystinosis &  status of eye treatment by Hong Liang

10:15-10:45 – Panel discussion on use of eyedrops by Ingele Casteels, Hong Liang, Anuj Chauhan


11:15-11:45 – Pregnancy and cystinosis by Graham Lipkin

11:45-12:15 – Male fertility and cystinosis by Koenraad Veys

14:45-15:15 – New-born screening for cystinosis & the effect of pre-symptomatic start of cysteamine treatment by Katharina  Hohenfellner

15:15-15:45 – Status of autologous HSC transplantation in cystinosis by Stephanie Cherqui

15:45-16:00 – Stem cell transplant followed by living donor kidney transplant leaving the patient free of immunosuppression by Paul Grimm

17:00-17:30 – Innovative tools for patients: Patients’ empowerment tool  + Cystinosis & Me App by Elena Levtchenko