Save the date!

Second International Netherton Congress (THINC)
Online, November Thursday 18, 3 – 7 PM CET and November Friday 19, 2021 3 –  6 PM,  a two days congress,

We are proud to announce the second International Netherton Congress (THINC), that will take place online on November 18 and 19 2021,

Why this CARE4NETHERTON congress?
Netherton Syndrome is a very rare and severe condition for which there is no cure or proper treatment yet. It is time for a change! Last year, we met almost one hundred people online, all suffering from or interested in Netherton Syndrom. We started in making  the difference together with patients, their families and involved professionals as one big group of experts. During the second congress we want to work on a guideline for Netherton syndrome and will define outcome measures for care and research in Netherton syndrome and we call this: CARE4NETHERTON

Join us!

The congress will be hosted by Erasmus MC University Medical Center Rotterdam, The Netherlands, which is part of the European Reference Network-SKIN. You’re invited to join online in Zoom, To organize the congress we are asking a small fee from participants: Patients/parents: € 15,- / Medical students: € 50,- / Professionals: € 150,-/ Companies € 1500,-  . If you cannot afford this fee, it is possible to join the congress free of charge. A registration link will be available on our website soon and will be sent to you in a separate email.

Program at a glance:

• 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
• The importance of outcomes, presented by patient representative Karin Veldman and researcher Dr. Jolien van der Geugten
• Saskia van Baarle is mother of 8-year old Olivia, Olivia has Netherton Syndrome. Saskia participated in a movie about her journey with Olivia
• Representing Netherton Syndrome in European Reference Network Skin, Karin wrote the Netherton Syndrome Patient Journey
• The kick-off of an international personal health record for Netherton syndrome
• Researchers Christine Bodemer, Virgil Dalm, Suzanne Pasmans, Anouk Nouwen and Karin Veldman and other specialists will answer your questions about Netherton Syndrome. Please let us know in advance.
• On day two we will plenary discuss the finalizing steps for outcome measures
• Of course, there will be time for questions and answers!

For more information and news, visit our website: https://nethertonnetwork.com/

Register via the weblink that you will receive shortly and that will also be available on the website.

Do you want to help us organize the next Netherton live meeting in 2022? Start your own fundraising activity!
To raise money Suzanne Pasmans did a 1/3 triathlon Brouwersdam90 September 25, and is going to run the marathon of New York November 7. Look at https://nethertonnetwork.com/ and find out how you can raise funds for our network.

We are looking forward to meeting you on Thursday November 18 and Friday November 19, 2021!

The Organizing Committee of the 1st International Netherton Congress.

 

 

Christine Bodemer, Karin Veldman, Suzanne Pasmans

Ja, ik doe mee en ik wil gelijk registreren! Yes, lead me directly to the registrationform!

• Congresbureau Erasmus University Medical Center
• Rotterdam Partners
• Move a Netherton
• Global Skin/ International Alliance Dermatological Patient Organisations
• Under your Skin Foundation

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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Please go to registry by using this link

Move a Netherton is the name of our fundraising programm. We want to continue the nethertonnetwork after the first online meeting on november 26. We need money to do this, and to gather this money, we need you!!

Let’s give you some examples of the fundraising in The Netherlands:

Professor Doctor Suzanne Pasmans ran a Marathon, together with her daughter Doris. She was determined to run the New York Marathon on november the first 2020. But as we all know, things went all a little bit different due to COVID-19. A change of plans and a change of scenery. We decided to move to Rotterdam, but by the time this Marathon had to take place, COVID-19 took over the city. But, Suzanne and Doris were unstoppable!! They decided to run the Marathon close to their home, in the Betuwe, near Utrecht in The Netherlands. On a rainy saturday in octobre they ran 42,2 kilometers and they raised more than € 8.000. They also finished with a personal record, because thinking about the congress gave them wings…

 

Maud Habets has Netherton Syndrome herself. Her skin has been bad, this year. But she has her mind set on raising money for our event and for the future of our network. So she decided to make small steps, with the marathon numbers 4, 2 and 2 in it. 4220 steps a day, until november 26. She keeps track of her steps with her activitytracker. She publishes her results on Facebook and Instragram.

 

 

 

Jeanine is the mother of a young man with Netherton Syndrome. She knows about the struggles of the patients. She is a frequent sporter herself, mostly riding a bike. The Netherton Expertise Center is located in the Erasmus Medical Center in Rotterdam. Fundraising organisation Under Your Skin is located in Bunde. Jeanine decided to make a 198 kilometer ride on her bike. This is an example of so much girlpowerrrr. ‘She explained, that she might feel a little exhausted after this tour. But people with Netherton Syndrome have to face challenges every day.’ Jeanine was involved in the foundation of Vereniging voor Ichthyosis Netwerken, the Dutch patient assosiation for Ichthyosis.

 

 

Wesley has Netherton Syndrome himself. He also used the numbers 4, 2 and 2. He and his girlfriend Sherida decided to go on a walk and a bike ride for 42,2 kilometers in one day. A big challenge, because Wesley often has problems with his legs due to Netherton. ‘But Suzanne Pasmans is running a marathon, he said, and I want to make a difference too. Let’s raise money together! Suzanne is always there for her patients. Let’s join forces and do this together.’

1^st International Netherton Congress (THINC)

Online, November 26, 2020, 4 – 8 PM CET

It is our pleasure to invite you for the 1st International Netherton Congress (THINC), that will take place online on November 26, 2020, 4 – 8 PM CET.

Register now!

Why this congress?

Netherton Syndrome is a very rare and severe condition for which there is no cure or proper treatment yet. It is time for a change! We want to start making the difference together with  patients, their families and involved professionals as one big group of experts. Because a patient, and a parent, is also an expert concerning Netherton syndrome. During the congress we will define our goals for the coming years.

Join us!

The congress will be hosted by Erasmus MC University Medical Center Rotterdam, The Netherlands, that is part of the European Reference Network-SKIN. You’re invited to join online on Zoom*. To organize the congress we are asking a small fee from participants: Patiënts/parents: € 15,- / Medical students: € 50,- / Professionals: € 150,- / Industry representatives: € 1.500,-. If you cannot afford this fee, it is possible to join the congress free of charge.

Click here to register.

Program at a glance:

• Karin Veldman shares her story about living with Netherton Syndrome
• Researchers Amy Paller, Suzanne Pasmans and Virgil Dalm explain scientific literature
• Christine Bodemer tells us about her study into the burden of disease
• What is new in therapy?
• Break-out sessions for patients, parents and professionals will address three questions: What is going well? What could be better? Which are your wishes for the future?
• After the break-out sessions we will plenary discuss our goals for the future.
• Of course, there will be lots of time for questions and answers!

For more information, news and registration, visit our website: https://nethertonnetwork.com/

Do you want to help us organize the next Netherton live meeting in 2021? Start your own fundraising activity! Look at https://nethertonnetwork.com/ and find out how you can raise funds for our network.

We are looking forward to meeting you on Thursday November 26, 2020, 4-8 PM!!

The Organizing Committee of the 1st International Netherton Congress

 

Welcome to the 1^st International Netherton Congress (THINC),

November 26 2020, 4 – 8 PM CEST (Online)

Why this congress?

On November 26 2020, we organize the 1^st International Netherton Congress, online. This initiative is also part of the European Reference Network-SKIN (ERN-SKIN). Netherton Syndrome is a very rare and severe condition for which there is no cure or proper treatment yet. It is time for a change! We want to start making the difference together with patients, their families and the involved professionals as one big group of experts. Because a patient, and a parent, is also an expert concerning Netherton syndrome! During this conference we want define our goals to work on during the next years.

Location:

The meeting will be online on Teams. Erasmus MC University Medical Center Rotterdam in The Netherlands, is hosting this ONLINE congress.

Time:

November 26 2020, 4-8 pm CEST

No longer alone!

When you have a very rare condition like Netherton Syndrome, it is very hard to share your story with fellow patients. The Dutch Netherton Network has been a group since 2009. Now it is time to build a worldwide network!

Program at a glance

We think it is important to share experiences about Netherton Syndrome. Experiences as a patient, a parent or as a professional.

Question such as: What have you tried in the past? Did it work for you? How do you experience your current life? Are you interested in new treatments? What is possible? As a team of patient experts and professional experts we want to make plans for an improvement of quality of life. Both on a short term and a long term.

Program at a glance:

• Karin Veldman shares her story about living with Netherton Syndrome
• Researchers Amy Paller, Suzanne Pasmans and Virgil Dalm explain scientific literature
• Christine Bodemer tells us about her study into the burden of disease
• What is new in therapy?
• Break-out sessions for patients, parents and professionals will address three questions: What is going well? What could be better? Which are your wishes for the future?
• After the break-out sessions we will plenary discuss our goals for the future.
• Of course, there will be lots of time for questions and answers!

Simultaneous program for professionals

We start the congress with a plenary session for all participants. After that we will split up in online break-out rooms. This makes it possible to have separate sessions for patients, parents and professionals. In the end we will all go back to a plenary session to share our ideas.

LONG TERM GOALS OF THINC:

• Exchange experiences of living with Netherton syndrome
• Exchange experiences of caring for people with Netherton syndrome
• Exchange experiences of treating people with Netherton syndrome
• Learn more about international research and treatment
• Build an international Netherton Network of patients and involved professionals
• Development new treatment (strategies)

Do you want to attend?

Please use the application form on this website

The form will guide you to the congress management system of Erasmus MC University Medical Center Rotterdam, The Netherlands.

We ask a small fee, why?

We ask a small fee, because we are offering a professional meeting online. We offer you the chance to meet Netherton patients and professionals, and to build a Netherton Network. The fee covers a small amount of the facilities of this meeting. This meeting has been made possible by a gift of Ichthyosis Networks, Global Skin (International Alliance of Dermatology Patient Organizations) and by personal fundraise activities by patients, families and professionals of The Dutch Netherton Network (link).

I cannot afford this fee, can I still attend?

If you cannot afford this fee, it is possible to join the congress free of charge. Please indicate this on the registration form.

Registration fee:

• Patients € 15
• Medical students € 50
• Professionals € 150
• Pharma € 1500

We are looking forward to meeting you on Thursday November 26, 2020, 4-8 PM !!

Do you want to help us internationally by starting you own fundraising activity for the live meeting in 2021? Check out here how you can raise funds for our network.

 

Organizing committee:

Suzanne Pasmans, Professor of Pediatric Dermatology, Erasmus MC University Medical Center Rotterdam, board member of the ERN-SKIN

Christine Bodemer, Professor of Dermatology at Necker Enfants- Malades Hospital, Paris/ head of ERN-SKIN

Virgil Dalm, Internist – Clinical Immunologist, Erasmus MC University Medical Center Rotterdam

Tim Laukens, patient expert and communication specialist

Karin Veldman, patient expert and president Vereniging voor Ichthyosis Netwerken

Maaike Hamann, Rotterdam Partners

Fred Balvert, Communication Erasmus MC University Medical Center Rotterdam

Address

Vereniging voor Ichthyosis Netwerken

Kennemerland 98

9405 LL Assen

Telephone

Telephone number                                                : 0031650453453

Chamber of Commerce: 64745805

ANBI (EU Tax number): 855814202

International Facebook Group: The international Netherton Network

Contact form

We would be very honoured to receive your donation.

Bank information:
Stichting Global Ichthyosys Syndrome Network
Bank: ABN AMRO
IBAN nummer: NL51 ABNA 0413 8103 72
BIC/SWIFT: ABNANL2A

Address:
ANBI Stichting Global Ichthyosis Syndrome Network
Uitterlier 5
2678TZ De Lier
HOLLAND.

By donating you are sponsoring our goals. We want to support people with Netherton Syndrome and other forms of ichthyosis. Your donation can make a difference!