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Program THINC 2

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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

 

TIMELINE SUBJECT
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

Start your own fundraising

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Start your own Move a Netherton action and collect money for our international Nethertonnetwork. With this money we can work on the next congress, we can build an online environement and we can, if we raise enough funds, do scientific research.

You can choose your own activity: run, jump, perform push ups, sing, cook for Move a Netherton. Help us to improve the quality of life of people with Netherton Syndrome.

How to start my own action:

4, 2, 2, we need you. Suzanne Pasmans, one of the founders of Netherton Network, ran a marathon to collect money.

 

  • Sing and film a song, 4.22 minutes
  • Bake 422 cookies and sell them
  • Raffle a ride in your convertible and price the lotery ticket 4.22
  • Do 42,2 pushups with your little nephew and let his parents pay

 

How do we support you?

  • We offer you support in starting up your own action, for example with a banner for social media. You can use this for promotion.
  • We are going to build a private facebookgroup, so we can support each other in raising funds and creating events
  • We show your fundraise action on this website

Fundraising in small stepps:

  • Come up with a nice title and story for your activity
  • Find or take a nice picture of yourself, which you can use for you action
  • Contact us, if you need more information
  • We can advise you in choosing a donation platform, but you can also choose your own. For example: you can use Go Fund Me
  • Tell us about your action and we are going to promote it!!!