• 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

As a global organization we want to provide patients, families and health care providers with reliable information and enable them to share knowledge and experience with each other. Closed facebook groups are very suitable for this, especially when it comes to rare diseases such as CMTC and other vascular malformations. The members who have joined a number of these facebook groups come from all over the world. Members of the Canadian and US CMTC-OVM organizations have also joined these facebook groups.

Therefore, have a look at our facebook groups and sign in. Also take a look at our twitter channel.


An overview of our social media channels:

Facebook group adults (private)

Facebook group young adults (private) plm. 15-25 years

Facebook group of children (private) plm. 8-15 years

Facebook page around the world

Facebook page Netherlands


Our Twitter channel


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