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