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
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| 15.15- 15.30
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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.
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| 15.30 – 16.15
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Focusgroups: Separate zoom meetings for patients and professionals. Generate outcome measures. |
| 16.15 – 16.30
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Presentation Professor Amy Paller : Relevant new development in Translational Research
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| 16.30 – 16.45
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Presentation Professor Christine Bodemer ERN SKIN. Importance for Netherton Syndrom in Care, Education and Research.
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| 16.45 – 17.00
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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.
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| 17.00 – 17.15
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Presentation patient journey Karin Veldman, together with drs Jolien van der Geugten
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| 17.15 – 17.45
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What is your story?
Discussion patient journey Presentation first infographic by Tim Laukens |
| 17.45 – 18.00
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Conclusion patient journey/Friday again on the agenda
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| 18.00 – 18.15
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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.
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| Evening | Dinner for people present in the Netherlands |
November 19
| TIMELINE | SUBJECT |
| 15.15 – 15.45
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Delphi round one: vote for you most important subsject concering Netherton care.
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| 16.00 – 16.30
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Conclusions patient journey in stages: talk with us, tell your story, complet the inforgraphic.
Infographic Tim |
| 16.30 – 16.45
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Anouk Nouwen presents results of systemetic therapy in Netherton Syndrome
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| 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 |