• 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


Personally identifiable information you provide on this website, we use only for the purpose for which you have given them. In addition to registration for our website, we also have a separate registration for our members/donors and financial administration.

How do we deal with your personal data?

We use your personal information only for the purpose for which you she has left behind. To your application for access to our website (for example, as a member) to be able to process, you are prompted for a number of data available. Should you also in the future (News) posts by CMTC-OVM like to receive then you can indicate on the registration form that your personal information, such as your name and email address to use for this too.

Who has access to your information?

Access to the website registration is reserved for Board members and the webmaster.

See, modify, or delete data

You have the right to see your personal information, to correct or remove it. You can send a request for access, correction or deletion to This email address is being protected from spambots. You need JavaScript enabled to view it.

How long will your data be stored?

CMTC-OVM saves personal data no longer than is necessary for the purpose for which you have left behind. After the data is destroyed. When you indicated (News) to want to continue to receive messages of CMTC-OVM then your details will be recorded. You can indicate your data no longer interim. You can do this by sending an email to This email address is being protected from spambots. You need JavaScript enabled to view it.


For questions or comments about the processing of your personal data please contact: This email address is being protected from spambots. You need JavaScript enabled to view it.


Upcoming Events


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CMTC-OVM On the 19th of September we have participated in the PGOSUPPORT Academy in Utrecht with theme 'impact'. What are… https://t.co/O7q5SYo2h1
Thursday, 19 September 2019 16:53
CMTC-OVM @gatesfoundation We are wondering how much medical and psychological support patients with rare diseases and famili… https://t.co/5wBzzC6R43
Thursday, 19 September 2019 15:46
CMTC-OVM @wegohealth On our new website many personal stories are shared. After a survey it was confirmed that patients and… https://t.co/hgYtoJN51O
Tuesday, 17 September 2019 20:21