PROGRAM THINC 2021 IN Central European Time

November 18

3.00 PM Introduction


Care4Netherton is the project to improve the care for people with Netherton syndrome, by defining outcome measures to evaluate care and therapy and by optimizing the patientjourney


3.15- 3.30 PM


Outcomes and new input

Outcomes conference 2020: what to do with the outcomes?

Karin Veldman and Dr. Jolien van der Geugten explain the importance of outcome . Professor Suzanne Pasmans gives an introduction into the methodology outcome measures.


3.30 – 4.15 PM


Discussiongroups: Separate zoom meetings for patients and professionals. Generate outcome measures.
4.15 – 4.30 PM


Presentation Professor Amy Paller : Relevant new development in Translational Research


4.30 – 4.45 PM


Presentation Professor Christine Bodemer ERN SKIN. Importance for Netherton Syndrom in Care, Education and Research.


4.45 – 5.00 PM


The patient journey

 Presentation movie Saskia van Baarle: Saskia has a nine year old daughter with Netherton Syndrome. In this movie she talks about all the things her family is facing in life.


5.00 – 5.15 PM


Presentation patient journey Karin Veldman, together with Dr. Jolien van der Geugten


5.15 – 5.45 PM


What is your story?

Discussion patient journey

Presentation first infographic  by Tim Laukens

5.45 – 6.00 PM


Conclusion patient journey/Friday again on the agenda


6.00 – 6.15 PM


COVID research presentation: Immunologist doctor Virgil Dalm has done a lot of research in the past one and a half year. He is going to tell us more about the pandemic virus and the consequences for people with Netherton syndrome.
6.15 – 7.00 PM Questions for the Netherton Expertise team? Ask anything you want to know.


Evening Have a nice evening. See you all tomorow.

November 19

We start at 3.00 PM


3.15 – 3.45 PM


Delphi round one: vote for you most important subsject concering Netherton care.


4.00 – 4.30 PM


Conclusions patient journey in stages: talk with us, tell your story, complet the inforgraphic.

 Infographic by Tim Laukens

4.30 – 4.45 PM


Drs Anouk Nouwen and professor Suzanne Pasmans present  results of systemetic therapy in Netherton Syndrome


4.45 – 5.15 PM Time to chat
5.15 – 5.45 PM Delphi Round Two: vote for your most important subjects in Netherton Care
5.45 – 6.00 PM Conclusion and final