The 3rd CNE International Cystinosis Conference
was held from July 7th till July 10th in Leuven, Belgium.

We will show the outcomes of the meeting on this site. We will show both recordings and presentations. The recordings are with translation in to Dutch, French, German, Italian, Russian, Spanish and Turkish. The conference language was English and therefore presentations are in English. This information will be available for 1 year from July 15th, 2022 onwards. See links below.

English
Dutch
Italian
Spanish
French
German
Turkish
Russian
Friday July 8th
00 – Conference presentation Fons – Ann – Elena C
09.15 – Elena Levtchenko – 2022 Cystinosis Treatment CNE conference Leuven
10.15 – 01 – Cystinosis Leuven meeting final 8.7.2022
10.15 – 02 – Germany
10.15 – 03 – Victor Gomez – treatmentMX
10.15 – 04 – Bring good treatment Cystinosis Network 2022last version
10.15 – 08 – Spain – Presentación general
11.45 – Marie Sandrine – replacing Leo Kluitmans – Monitoring of cysteamine treatment-laboratory perspective-Leuven
12.00 – Marlies Cornelissen – CNE presentation Cornelissen Monitoring of Cysteamine treatment
13.45 – Francesco Emma Overview of Cystinosis Research 2022
14.15 – Newell Leuven Meeting 080722
14.45 – Aude Servais – ECYSCO_060722
15.15 – Paul Grimm – 2022, 07, 08 Medications after kidney transplantation and improved treatment of infections 3.22.52 AM
Sponsor slide for opening and breaks 8-10 juli

Saturday July 9th
00 – Conference presentation Fons – Ann
08.30 – Dieter Haffner – cystinosis_Leuven July 9_2022_V7
09.00 – Laforet – cystinosis and muscle P Laforet def
09.30 – Christian Koeppl
09.45 – Hong Liang – LEUVEN Cystinosis congres Dr Liang 09July2022
10.15 – Ingele Casteels – Panel discussion- eye drops in cystinosis- IC-def
11.15 – Lipkin CNE Conference July 2022
11.45 – Koenraad Veys – Fertility in Cystinosis_07072022
14.45 – Katharina – 09_07_2022_Vortrag_Leuven_last
15.15 – Stephanie – C ystinosis conference – July 2022
15.45 – Paul Grimm – 2022, 07, 08 Stem cell and Kidney Tx GRIMM
17.00 – Elena – 01 – 2022 CNE Meeting _Presentation Tool Levtchenko
17.00 – Elena – 02 – 2022 CNE Cystinosis & Me
Cystinosis Leuven Lore Willem 2022
Sponsor slide for opening and breaks 8-10 juli
Ready Steady Go – TIER Network
1. Program and Discussion Notes Paramedical Meeting
2. Femke Glaap How to let adolescents with cystinosis grow up into adults with cystinosis
3. Elke Buit Treatment Compliance
4. Ariadne Van Hulle Transitiong from tube to oral feeding
5. Carmen Campana Early enteral support in children with cystinosis
6. Judith Erler Nutritional Care Cystinosis
Bekijk de video
Cystinosis Leuven Lore Willem 2022

What can you expect? What did you miss?

Thursday July 7

Paramedical Meeting: View the presentations and discussion notes

Research Meeting: This hybrid meeting was not recorded and presentations are not made available as these may contain unpublished data.

Friday July 8

Main Conference: videos and PDF’s of all presentations.

Poster pitches and poster session: We will show pitches and posters when they do not contain unpublished data.

Speakers dinner: All speakers on the conference were invited for a dinner in Heverlee.

Cooking workshop: the adult patients had a very nice cooking workshop at Dishcover in Leuven.

Walking tour Leuven: we had a guided walking tour through Leuven.  Highlights were the central library of the KU Leuven built with funds from American Universities after world war 1 and the beautiful ‘begijnhof’ a city in the city.

Saturday July 9

Child care: has been available all day and children built a home inside the room and were playing in the yard.

Main Conference: videos and PDF’s of all presentations.

Consensus meeting of physicians: the outcome of this meeting will be published.

Motivational Speaker: Jaap Bressers last minute replaced Joyce de Ruiter, who could not come due to private circumstances. You can watch the video of his performance for 6 weeks starting from July 15th, 2022 onwards.

Poster & Poster Pitch awards: Louise Medear has won the Roz Anderson award for best poster and Leonie Kleidel has won the Jean Hotz award for the best poster pitch presentation.

Conference Dinner: See the video of the band the Skullfuckers, which played during dinner.

Sunday July 10

Child care: was operational like on Saturday.

Quality of Life: See presentation by Lore Willem

Workshops: we had 3 workshops, one for adult patients, one for parents of children from 6-18 and one for parents of adults. Despite some language barriers everyone joining was able to do his or her story and several important subjects were discussed. The workshops were highly appreciated.

Graffiti tour Leuven: the children in age group 12-18 had the graffiti tour as alternative to the workshops. The tour was also joined by siblings and some parents.