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

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


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

In the year 2018 we will organise many activities again and participate in many activities of other international organizations.

Herewith the overview of our activities in 2018.


Activities for members (incl. members of Canadian & USA organisations):

Efteling7 July: annual global family day at the Efteling (Dutch amusement park). For an impression you can check the report 2017 .


Landgoed ISVW2 and 3 November: global CMTC-OVM membership Conference.

The Conference will take place at estate ISVW, Leusden (see website). It begins on Friday night and lasts the entire Saturday including dinner.
For our foreign guests we can arrange 'site seeing' as well. We have developed a special document about the Netherlands: Information about the Netherlands

Participation in conferences of other organizations:


Canadese vlag

May: participation in the CMTC-OVM Canada Conference (date to be determined).

Logo Eurordis

May: participation in the global Eurordis Conference in Vienna (May 10-12). 


July: particpation in the the CMTC-OVM US Conference (July 21).

October: participation in the NORD Conference (Washington DC).

Other activities:

  1. Work on genetic research in Canada (huge delay due to formal approval proces by Medical Ethical Approval Committee).
  2. Development of a global network of ' advocates ' by country.
  3. Recruitment of funds, especially for the program ' Impact '.
  4. Arrange medical diagnoses.
  5. Finalize development new website.
  6. Work with Eurordis in RareConnect program.
  7. Work with ' the Mighty '.
  8. Work with (academic) hospitals and medical expert teams (globally).
  9. Publishing news etc. in particular, through our social media channels.
  10. CMTC-OVM publishing newsletter.
  11. Develop Expertise Map CMTC.
  12. Participate in national rare disease day in Netherlands (February 28, 2018).
  13. Participate in conferences of the Ministry of health & Sports.
  14. Participate in conference of the Patient Academy (organised by Novartis).
  15. Participate in conference organised by Roche.

Please help us help to improve the life of people living with rare blood vessel diseases, your support is highly appreciated!


Upcoming Events


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


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


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


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