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
Call for abstracts - Invitation for young researchers | SEE MORE INFORMATION HERE
Preliminary programme
Thursday July 7th – Research & Paramedical Conference
12.30-13.00h: walking lunch
Parallel 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 each other, 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: Parallel 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
Parallel 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 newborn 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
Parallel 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
