3rd CNE International Cystinosis Conference

SAVE THE DATE!

Research Meeting: Thursday July 7th

Family Conference: Friday-Sunday July 8-10th

  • Hosted by: Prof. Elena Levtchenko, UZ Leuven, KU Leuven and Cystinose Groep Nederland en Vlaanderen 
  • Location: Maria-Theresiacollege, Leuven, Belgium
  • Conference language: English
  • Translation services: German, French, Spanish, Italian, Dutch, Russian and Turkish
  • Childcare will be provided on Friday and Saturday
  • Social program for adoloscent and adult patients
  • Further information will be made available by mail and via CNE website below Information: https://cystinosis-europe.eu/
  • Contact: cystinose@ziggo.nl 

 

Preliminary programme

Thursday July 7th – Research & Paramedical Conference

12.30-13.00h: walking lunch

Parallell sessions:

13.00-17.00h: Research conference for professionals and patient representatives only

13.00-17.00h: Paramedical conference for nurse practitioners, physiotherapists, dieticians etc.

17.30-19.30h: Welcome reception and registration

Friday July 8th – Patient & Family Conference, day 1

Plenary session 1: starting to know eachother, cystinosis treatment in the world

8.30-8.45h: opening

8.45-9.15h: What do you know about cystinosis? Interactive quiz

9.15-9.45h: Overview of cystinosis treatment in 2022

9.45-10.15h: Treatment of cystinosis patients around the globe

10.15-11.15h: Bring good treatment to all patients. Pitches of 5 min and panel discussion

11.15-11.45h: coffee break

Plenary session 2: Monitoring of cystinosis treatment

11.45-12.00h: Monitoring of cysteamine treatment, laboratory perspective

12.00-12.15h: Monitoring of cysteamine treatment, paediatric perspective

12.15-12.30h: Monitoring of cysteamine treatment, adult perspective

12.30-12.45h: Q&A Monitoring of cysteamine treatment

12.45-13.45h: lunch

Plenary session 3: Improving cystinosis treatment

13.45-14.15h: Overview of cystinosis research

14.15-14.45h: New and improved medication, cysteamine prodrug

14.45-15.15h: Long term follow-up, importance of International registries

15.15-15.45h: Medications after kidney transplantation and improved treatment of infections

15.45-16.15h: Tea break

16.15-17.00h: Short poster presentation

17.00-18.00h: Poster session 1

18.00-22.00h: Parallell social events for Patients & siblings age 13-18, adult patients, all others

Saturday July 9th, Patient & Family Conference , day 2

Plenary session 4: Cystinosis as a multi-organ disease

8.30-9.00h: Bone disease in cystinosis including surgery

9.00-9.30h: Muscle disease in cystinosis

9.30-9.45h: How to improve muscle function: IMPACT study

9.45-10.15h: Eye complications & status of eye treatment with Cystadrops

10.15-10.45h: Panel discussion on use of eyedrops

10.45-11.15h: Coffee break

11.15-11.45h: Neurocognitive functioning in cystinosis patients

11.45-12.15h: Pregnancy and cystinosis (including pre-implantation diagnostic)

12.15-12.45h: Male fertility and cystinosis

Parallell sessions:

12.45-13.45h: lunch

13.45-14.45h: Motivational speaker

12.45-14.45h: Consensus meeting treatment goals in cystinosis (for professionals only)

Plenary session 5: Future perspectives, from new born screening to genetherapy

14.45-15.15h: New born screening & the effect of pre-symptomatic start of cysteamine treatment

15.15-15.45h: Status of autologous HSC transplantation in cystinosis & condition of the patients

15.45-16.30h: Q&A gene therapy

16.30-17.00h: tea break

17.00-18.00h: Poster session 2

19.00-21.00h: Conference dinner with best poster/poster presentation award

Sunday July 10th:  Patient & Family Conference , day 3

9.00-9.30h: Results QoL survey, Leuven

9.30-10.15h: Workshop introduction by personal stories and experiences of parents and patients

10.15-10.45h: coffee break

Parallell workshops

10.45-12.00h: Adult patients

10.45-12.00h: Parents of adult patients

10.45-12.00h: Parents adolescents patients 13-18

10.45-12.00h: Parents of young children 6-12

10.45-12.00h: Parents of young children 0-6

9.30-12.00h: Adolescent patients & siblings; gravity tour Leuven

Plenary session:

12.00-12.30h: Conference closure and Farewell


Save the date flyer (pdf)