On Saturday, 2 November 2019, we will organize our annual global members meeting in the Netherlands. 

Our guests can already get acquainted with each other on Friday evening, 1 November, from 20:00. The programme includes interesting parallel sessions on a variety of subjects.

On Saturday evening, we will organize a dinner buffet for all participants!

You need to be a member to participate in our conference and paid your dues. In case you are not a member yet please register first as member.


Personal medical advice

Would you like to receive personal medical advice? It's possible! Choose any of the following options. You can register via the registration form for the members meeting (Registration at the bottom of this page).
Please send the medical data in advance to our medical team in Rotterdam (not to us) for preparation: medical information

For all consultations, the order of registration will be respected. Also, capacity is limited.


Simple personal medical advice

On Saturday, 2 November, you will be able to receive a free (simple) medical consultation. This will take place in a separate room so privacy is ensured. Please register in advance via the registration form (Registration at the bottom of this page).


Extensive personal medical advice

Would you like an extensive personal medical consultation? That is possible on Friday, 1 November, at the University Hospital in Rotterdam. You have to register before October 27th (Registration at the bottom of this page). There are some costs that come with this consultation.


Conference location

This year, we will be organizing our conference at the International School of Philosophy.

Landgoed ISVW
Dodeweg 8
3832 RD Leusden

Information Conference Venue

Book rooms: 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 available. We have negotiated and we were able to get the special price of €75 per night per room. This includes breakfast.
These rooms are intended for a maximum of two adults and possibly a child up to 12 years (separate mattress). Children between 0-6 years old can stay for free in their parents' room. Baby's cots are not available in the hotel. An extra mattress on the floor with bed linen costs €25 per night (incl. breakfast). A bed with mattress costs €25 per night (is hired separately, excl. breakfast). Breakfast for children between 4 and 16 years old costs €8.25 per person per day.

Local tourist tax is not included in these prices.

For reservations at ISVW please send an email to: This email address is being protected from spambots. You need JavaScript enabled to view it.

The hotel room has to be booked and paid by the user. Costs for not showing up will be charged to the person who requested the booking.



During previous conferences, patients were able to enjoy a massage and now, we will be offering it again. For all massages, the order of registration will be respected. Also, capacity is limited.

Massage is a way to take care of body and mind, to relieve tension and stress, or to effectively tackle specific complaints. Massage also helps you to understand the language of your own body by listening to your physical signals.

Where is the tension, where is the unrest, where do I feel space in my body, where do I feel stuck, where do I feel heavy or tight. These physical sensations can be experienced by means of a massage. Emotions, thoughts and other sensations, are telling you a story. And that story is much more complete than the story we have shaped by our thinking. Actually making contact with all parts of yourself ensures that you will start flowing, so much that you will feel like you are coming back to life. You will literally start to feel better inside your own skin. Massaging is touching with attention. It helps you to consciously connect with who you are and what you feel. During a massage, you have the chance to rediscover yourself, to relax and to be touched. You can reconnect with your true you. The touch of massage can help you unleash old pain, so you can create space. Space in body and mind.


Children's Event

For children of all ages, we will once again organize an extensive children's event! There will be a separate room with accompaniment and all sorts of entertainment. Crafting has proved to be a great success for children of almost all ages, with even 16 year olds having a lot of fun! Of course, we have also invited Alex Dings as our clown and balloon artist. The kids will not go home empty-handed!


Young Adult Event

For children of practically all ages, we are again organizing an extensive children's event! For this we have a separate room with guidance and all kinds of entertainment. Crafting appears to be a great success for almost all ages, for example also having 16 year olds have a lot of fun! Of course we have Alex Dings as a clown and balloon art again. The children do not go home empty-handed!

For the older children and young adults, we have various Virtual Reality Experiences such as the dismantling of a bomb ... In addition, also an outdoor Crime Scene Investigation event where you have to solve a crime.


Board election

Our board has expanded from 3 to 5 people and we are getting a General and Daily management. In addition to the Chairman, Treasurer and Secretais (Daily board), two more people will take on the role of Communication and Youth Representative. We already have a candidate for the role of Communication. We do not yet have a candidate for the role of Youth Representatives. Are you between 18 and 30 years of age and are you interested in this role, then put yourself forward! Send an email to Secretariat@CMTC.NL with your background, goals and motivation.

The Daily board members are reselectable for a period of 3 years and as a member, you can also apply. There will then be a vote. If you are interested in one of these roles, take a look at these roles' profiles and send an email to secretariat with your background (e.g. a curriculum vitae), goals and motivation.



Below you will find the program for Saturday, 2 November.

All sessions are both in Dutch and English, as much as possible. We will record as many sessions as possible (video) and make them available on our website (in the members only section).

Friday, 1 November

Time Speaker(s) subject
20:00 - 22:00 - Welcome with snacks and drinks (bar ISWV)

Saturday, 2 November
Time Speaker(s) Subject

09:00 - 09:30


 Reception and Registration
09:30 - 10:15  Lex van der Heijden  Welcome, association matters and interactive survey with smartphone
10:15 - 11:15  Dr. Maaike Vreeburg (parallel 1)  Our genetic research into CMTC
10:15 - 11:15  Nirohshah Suthakharan (parallel 2)  Holistic Person-Centered Care
10:15 - 11:15  Johannes Verheijden (parallel 3)  Take care of yourself!
11:15 - 11:30 -  Break with pie
11:30 - 12:15  Prof. Dr. Suzanne Pasmans & Dr. Peter de Laat (main hall)  Questions and Answers
12:15 - 13:00  Dr. Patrick Kemperman (main hall)  Psychological aspects of life with a rare visible condition
13:00 - 14:00 -  Lunch and getting acquainted
14:00 - 15:00  Maria Genova (parallel 4)  The dangers of social media
14:00 - 15:00  Hedy van Oers (parallel 5)  Quality of life mapped out
14:00 - 15:00  Marjolein van Kessel (parallel 6)  Patient journey
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  Lex van der Heijden (parallel 9)  Dutch speakers - discussion
16:30 - 17:00  Lex van der Heijden  Completion
17:00 - 18:00  Main entrance outside  Fresh treacle waffles
17:00 - 18:00  Bar  Snack and drink
18:00 - 20:30  Restaurant  Dinner

Please note:

The maximum amount of diagnoses is not yet known at this time. Joining the diagnosis list will be in order of registration.
The maximum capacity of the main room is 150 people.
Given the cost of our conference, we ask our participants aged 18 and over to contribute €15 per person participating dinner. This does not apply to speakers and volunteers.