Het programma van THINC/Programm

We are so proud to present you the programm of THINC 2020, the first Netherton congress for patients, family and doctors ever!

We start at 4 PM CET, but you can login earlier, to socialise.

16.00: Warm welcome from the Health care professional Erasmus MC Medical Center, on behalf of the board, professor Ans van der Ploeg is dedicated for rare diseases, such as the ultra rare disease Netherton syndrome.

16.10: Patient journey by Karin Veldman, member of the Netherton Expert Center in Rotterdam

16.15: Introduction of the speakers by Professor Suzanne Pasmans

16.20: Short movie by Tim Laukens

16.25: 5 minute break

16.30: “What is known about the cause of Netherton Syndrome”, by Professor Amy Paller, followed by Questions and Answers

16.50: “The individual burden of Netherton Syndrome”, by Professor Christine Bodemer

17.00: “Psychosocial aspects of Netherton Syndrome of patients and their family” by psychologist Josette Versteegh, followed by Questions and Answers

17.15: 5 minute break

17.20: “Treatment Strategy Overview”, by Professor Suzanne Pasmans, pediatric dermatologist and doctor Virgil Dalm, imunologist, followed by Questions and Answers

17.40: Previous collected questions answered by the pannel of speakers. Questions about Netherton Syndrome and COVID 19

18.05: Break out rooms: questions in the groups are

  • Things you are happy with in care
  • Things you worry about
  • Wishes for the future
  • Five items we should proceed on in the future

Doctors have a separate breakout with Pharma

18.35: five minutes break

18.40: Mentimeter, make a cloud of words, follow the instructions by the host

18.50: Plenary discussion about subjects in the breakout rooms, there is a speaker for each group

19.20: Any other business? Questions, remarks?

19.30: The International Netherton Network of patients and professionals in the future

19.40: The International Netherton Congress 2021

19.50: Happy hour!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!