On Saturday 3 november 2018 we organize our annual global meeting in Netherlands.

Our guests can Friday night november 2 of each other during the drinks from 20 hours. The program contains interesting parallel sessions by speakers from home and abroad.

Saturday night we organise a dinner buffet for all participants!

Personal medical advice

Would you use the option for personal medical advice? Choose from the following options. You can register via the registration form for the members meeting ("sign in" button at the bottom of this page). We recommend regularly, such as once a year, with a personal consultation as the main reason that you as a parent often sees no changes because you see your child every day. The same applies to adult patients when they observe themselves.

The advice capacity is limited and that the order of registration is determinative.

Simple personal medical advice

There is the opportunity for a free (simple) medical advice on Saturday 3 november. This takes place in a separate room so the privacy is guaranteed. Like to register in advance using the registration form ("sign in" button at the bottom of this page).

Extensive personal medical advice

Want a comprehensive personal medical advice? That can on Friday 2 november in the University Hospital in Rotterdam. You must sign in before 27 October ("sign in" button at the bottom of this page). There are costs associated with this advice.

Attention: for both types of advice our doctors need medical data in order to prepare themselves. This data can be entered in a MSWord file and send directly to our doctors via email (This email address is being protected from spambots. You need JavaScript enabled to view it.). We as organisation are not involved in this process for privacy reasons.


New: personal psychological interview

We organize for many years separate sessions during our Conference on psychological and psychosocial aspects of living with a disease such as bullying at school with CMTC as subjects for example. In these group discussions, it might not easy at first to share his/her personal experiences and secondly this can be difficult in a language other than the native language.

In 2018, we start with private sessions of up to half an hour with Dr. Wouter van der Schaar (medical psychologist and psychotherapist). Of course these conversations in a confined space. Participation can be arranged by entry on the special list.


Conference Location

This year we organize our Conference again at International School of philosophy.

Landgoed ISVW
Dodeweg 8
3832 RD Leusden
The Netherlands


Information Conference venue

Rooms to book: send an email to: This email address is being protected from spambots. You need JavaScript enabled to view it.

At this location hotel rooms are also available for which we have negotiated a special price of €69 per night per room. This includes breakfast.
These rooms are meant for up to two adults and possibly a child up to 12 years (separate mattress). Children of 0-6 years old can stay for free in their parents ' room. In the hotel are no baby beds available. An extra mattress on the floor with bed linen costs €25.00 per night (incl. breakfast). A bed with mattress costs €25.00 per night (to be hired separately, excl. breakfast). Breakfast for children between 4 and 16 costs €8.25 per person per day.

At these prices are excluding the local tourist tax.

For booking at ISVW like to send an e-mail to: This email address is being protected from spambots. You need JavaScript enabled to view it.

The hotel room must be booked and paid for by the user. Cost for not showing up, be charged to the person who requested the reservation itself.



During our conferences in 2015 and 2017 patients could use a massage and we also now offer massage. Here, the order of registration and that the capacity is limited.

Massage is a way to maintain body and mind, to reduce stress to or focus and effectively to address complaints. Massage is also the language of the own body learn better understood by listening to your body signals.

Where's tension, where's unrest, where do I feel space in my body, where is it, etc. These physical sensations you can experience through a massage. Emotions, thoughts and other sensations, tell you a story. And that story is far more complete than the story what we have shaped by means of our thinking. Really make contact with all parts of yourself causes that you will get you back to life. You will literally better in your skin. Massage is a touch with attention and lets you make conscious contact with who you are and what you are feeling. During a massage, you have the chance to rediscover yourself, relax and letting you (to). You connect and speak again with your true self. The touch of massage can help you release old pain making space. Space in body and mind.


Children's event

For children of practically all ages we organise an extensive children's event again! We have a separate room with guidance and all kinds of entertainment. The tinkering turns out for almost all ages a great success which, for example, also 16 year olds have a lot of fun! Of course we have Alex the clown and balloon artist. The children do not go home empty handed!


Young adults event

This year we also organize a young adults event (approx. 13-25 years). One activity is organized in the morning and one in the afternoon. Take also outdoor clothing and sturdy shoes with you! You will need this ...



Below you will find the preliminary program for Saturday 3 november (we are still waiting for the final confirmation of a number of speakers).
All sessions are as much as possible in both Dutch and English. We will include as many sessions on video and this on our website (accessible in the members only section).


Friday 2 november

20:00-22:00  Welcome with snacks and drinks (bar ISWV)


Saturday 3 november
Time Speaker (s) Topic



 Reception and registration
09:30-10:15  Lex van der Heijden  Official welcome, Association Affairs and interactive survey with smartphone
10:15-11:15  Marjolein van Kessel (parallel 1)  How to deal with when you are looking differently (STEPS method)
10:15-11:15  Dr. Tychon Geeraedts (parallel 2)  Treatment vascular malformations through the eyes of a radiologist
10:15-11:15  Johannes Verheijden (parallel 3)  After the diagnosis
11:15-11:30 -  Break with 'vlaai'
11:30-12:15  Prof. Dr. Suzanne Pasmans & Dr. Peter de Laat (main hall)  Questions and answers
12:15-13:00  Prof. Dr. Leo Schulz-Kool (main hall)  Latest developments: an update
13:00-14:00 -  Lunch and meeting other people
14:00-15:00  Ir. Marco Dings (parallel 4)  Demonstration new website
14:00-15:00  Dr. Els Jonker (parallel 5)  How about bro's and sis' (brothers and sisters of a patient)?
14:00-15:00  Tjitske Bezema (parallel 6)  Being happy in difficult circumstances
15:00-15:15 -  To parallel sessions
15:15-16:15  To be determined (parallel 7)  German speakers-discussion
15:15-16:15  To be determined (parallel 8)  English speakers-discussion
15:15-16:15  To be determined (parallel 9)  Dutch-speakers-discussion
16:30-17:00  Lex van der Heijden  Summary and conclusion
17:00-18:00  Main entrance  Fresh stroopwafels, drinks and snacks
18:00-20:30  Restaurant  Dinner
 List    Personal medical advice (indicated during registration)
 Register    Personal psychological advice (add yourself to the list during conference)
 Register    Massage (add yourself to the list during conference, patients first)

Please note:

The maximum number of diagnoses is not yet known at this time. The placement on the diagnosis list goes in order of notification.
The maximum capacity of the main hall is 150 people.
Given the cost of our Conference, we ask our participants aged 18 years and over to a contribution of €15 per person taking part in the dinner. This does not apply to speakers and volunteers.