• Mission
  • Activities
  • Member meeting NL
  • Family day
  • Children's website
Mission

CMTC OVM Mission

"Our activities are aimed at the well-being of people who suffer from vascular malformations like CMTC ('Van Lohuizen syndrome') and to stimulate the scientific research of these afflictions."

CMTC Efteling 20090613 007

CMTC activities

An example of the many activities which we are performing. With special thanks to Mark Knopfler (Dire Straits) for allowing the use of his music.

Member Meeting NL

Member meeting NL 2015

Our global member meeting was held on the 14th of November 2015 in the Netherlands.
A total of 126 people from 10 countries was present.

Read more

Family day 2015 (Efteling)

On Saturday the 27th of June we organised the Dutch CMTC-OVM family day again! This year we had chosen the Efteling!
It was perfect in all aspects!

Read more

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Youth Education Rare Diseases

This is a special website for children in the age around 10-15 years. Here you can travel through a number of worlds together with Amy and Max!

 

Register as member

Our annual Family day 2018 will take place on Saturday 7th of July in the Efteling!
The welcome reception will take place from 9 am to 10 am in the Efteling Theater (at the right after the entrance). The park opens at 10 am and since you've already had the access control you can directly go into the park!

From 13 hours to 14 hours a comprehensive lunch will be served at the restaurant ' the courteous Herald ' in the Efteling hotel. After that you can visit the park up to 23 hours that night! In short this family day takes 14 hours and everyone will have fun!

We will set up a WhatsApp group for that day so that we can share information easily and quickly, we can help people if necessary. Participants will be able to find each other.

We have noticed that sometimes unknown persons register for our Family Day. This day is also intended to promote mutual contact and is therefore only accessible to members who have paid their dues.
Our volunteers also have access to this day.

Efteling website (multiple languages)

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Upcoming Events

Oct
9

1010:1010 09-10-2019 - 1111:1010 16-10-2019

Oct
18

1010:1010 18-10-2019 - 1111:1010 23-10-2019

Nov
1

0808:1111 01-11-2019 - 1010:1111 02-11-2019

Nov
9

0505:1111 09-11-2019 - 0505:1111 14-11-2019

Twitter

CMTC-OVM @LochmullerLab @ConnectRD @ceci_jm @CHEOhospital @IMI_PREFER Nothing about patients without patients ... According… https://t.co/HlGd2Y7EsB
Saturday, 12 October 2019 15:46
CMTC-OVM @ChanZuckerberg @bsw5020 @Iamals Diagnose of rare diseases takes on average 5-7 years and in over 40% more than twi… https://t.co/DaiktBMgh5
Friday, 11 October 2019 18:25
CMTC-OVM At this very moment over 60 people will participate from different countries in our global member conference in the… https://t.co/xUmEUCgsFi
Friday, 11 October 2019 18:20