Below you will find a preliminary version of the programme. We will update this page when more definite information becomes available.

Besides the main conference programme as shown in the outline below, this conference will provide separate social programs for  adult patients and  adolescent patients and siblings. Child care (4 till 12 years of age) will be available during the conference. The content of the different programmes will also be shown below.



  • Thursday


  • July 7, 2022


  • Research Meeting


  • Researchers, Medical Doctors, CNE members
  • Thursday
  • July 7, 2022
  • Paramedical meeting
  • Nurses, Physiotherapists, Psychologists, Speech therapists
  • Friday & Saturday
  • July 8 & 9, 2022
  • Family Conference
  • Patients and families, Researchers, Medical Doctors, CNE members, Representatives of Pharmaceutical Companies
  • Sunday
  • July 10, 2022
  • Workshops
  • Patients and families

Social programme

  • Guided walking  tour of Leuven, open to all participants of the conference
  • Children’s activities during the family conference & workshop.
  • Child care (4 till 12 years of age): children’s activities during the family conference & workshops will be organised.
  • Adolescent patient graffiti tour Leuven, percussion workshop and dinner
  • Adult patient cooking workshop
  • Motivational speaker
  • Conference dinner

Conference topics

Cystinosis treatment in the world

  • Overview of cystinosis treatment in 2022
  • Treatment of cystinosis patients around the globe

Monitoring of cystinosis treatment

  • Monitoring of cysteamine treatment laboratory perspective
  • Monitoring of cysteamine treatment paediatric perspective
  • Monitoring of cysteamine treatment adult perspective

Improving cystinosis treatment

  • Overview of cystinosis research
  • New and improved medication for cystinosis: cysteamine prodrug
  • Long-term follow-up of nephropathic cystinosis importance of international registries
  • Medications after kidney transplantation and improved treatment of infections

Future perspectives in cystinosis:  from new born screening to gene therapy

  • New-born screening for cystinosis & the effect of pre-symptomatic start of cysteamine treatment
  • Status of autologous HSC transplantation in cystinosis & condition of treated patients

Cystinosis as a multi organ disease

  • Eye complications in cystinosis & status of eye treatment with Cystadrops
  • Bone disease in cystinosis including surgery
  • Muscle disease in cystinosis
  • Neurocognitive functioning in cystinosis patients
  • Pregnancy and cystinosis
  • Male fertility and cystinosis