Welcome to the 1st International Netherton Congress (THINC),
November 26 2020, 4 – 8 PM CEST (Online)
Why this congress?
On November 26 2020, we organize the 1st 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
