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
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| 3.15- 3.30 PM
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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.
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| 3.30 – 4.15 PM
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Discussiongroups: Separate zoom meetings for patients and professionals. Generate outcome measures. |
| 4.15 – 4.30 PM
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Presentation Professor Amy Paller : Relevant new development in Translational Research
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| 4.30 – 4.45 PM
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Presentation Professor Christine Bodemer ERN SKIN. Importance for Netherton Syndrom in Care, Education and Research.
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| 4.45 – 5.00 PM
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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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| 5.00 – 5.15 PM
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Presentation patient journey Karin Veldman, together with Dr. Jolien van der Geugten
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| 5.15 – 5.45 PM
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What is your story?
Discussion patient journey Presentation first infographic by Tim Laukens |
| 5.45 – 6.00 PM
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Conclusion patient journey/Friday again on the agenda
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| 6.00 – 6.15 PM
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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. |
| 6.15 – 7.00 PM | Questions for the Netherton Expertise team? Ask anything you want to know.
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| Evening | Have a nice evening. See you all tomorow. |
November 19
We start at 3.00 PM
| TIMELINE | SUBJECT |
| 3.15 – 3.45 PM
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Delphi round one: vote for you most important subsject concering Netherton care.
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| 4.00 – 4.30 PM
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Conclusions patient journey in stages: talk with us, tell your story, complet the inforgraphic.
Infographic by Tim Laukens |
| 4.30 – 4.45 PM
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Drs Anouk Nouwen and professor Suzanne Pasmans present results of systemetic therapy in Netherton Syndrome
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| 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 |