Program THINC 2

November 18

15.00 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


15.15- 15.30


Outcomes and new input

Outcomes conference 2020: what to do with the outcomes?

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


15.30 – 16.15


Focusgroups: Separate zoom meetings for patients and professionals. Generate outcome measures.
16.15 – 16.30


Presentation Professor Amy Paller : Relevant new development in Translational Research


16.30 – 16.45


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


16.45 – 17.00


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.


17.00 – 17.15


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


17.15 – 17.45


What is your story?

Discussion patient journey

Presentation first infographic  by Tim Laukens

17.45 – 18.00


Conclusion patient journey/Friday again on the agenda


18.00 – 18.15


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.
18.15 – 19.00 Questions for the Netherton Expertise team? Ask anything you want to know.


Evening Dinner for people present in the Netherlands

November 19


15.15 – 15.45


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


16.00 – 16.30


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

 Infographic Tim

16.30 – 16.45


Anouk Nouwen presents results of systemetic therapy in Netherton Syndrome


16.45 – 17.15 Delphi Round Two: vote for your most important subjects in Netherton Care
17.15 – 17.45 Time to chat
17.45 – 18.00 Conclusion and final