• Mission
  • Activities
  • Member Meeting NL
  • Member meeting USA
  • Familyday

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."

Promotion CMTC 2010
Promotion CMTC 2009
Promotion CMTC 2007

Promotion CMTC 2005

CMTC activities

A sampling of the many activities in which we're involved.  With special thanks to Mark Knopfler (Dire Straits) for allowing the use of his music.

Member meeting NL 2013

On  the 2nd of November 2013 we have organised again our annual member meeting in the Netherlands with eg. a series of parallel sessions. The number of participants was this year 80 from Australia/Switzerland, Belgium, Germany, Iraq, Japan/Dubai, the Netherlands and the USA.

Read more


Member Meeting USA 2012

On July 14, 2012, we organized near Washington, DC for the member meeting of our members in the USA and Canada. Many members have used the opportunity for free medical diagnosis by Prof. dr. van Steensel.

Read more

Family Day 2013 (Efteling)

On Saturday the 22nd of June it was time for the Dutch CMTC-OVM family day again! This year we did select the Efteling again and our participants had another great day!

Read more


The registration for our members meeting on November 15, 2014 in the Netherlands is still open. We offer a broad program and also for the children many activities! For information and registration

We have designed a new English-language poster especially to be used during (International) conferences. The size is A0 and we have printed this poster on waterproof canvas so that we can use this poster also outside. Retrieve poster: poster

The CMTC-OVM organization is now also part of the RareConnect initiative which is a partnership between the American organization NORD and Eurordis.

Read more: CMTC-OVM in Eurordis RareConnect

The Danish Embassy in the Netherlands helps us with finding find new contacts in the field of rare diseases and increasing our visibility in Denmark. We have a few members in Denmark but hopefully we can reach more patients and their families in this way and help.

On Saturday, November 15, 2014 we organize our annual member meeting in the Netherlands (near Amersfoort in Leusden). The participants can also now choose from several parallel sessions that cover a wide range of topics.
For the children there is again a separate team and space available in which to do something for practically all ages. Members can get a free diagnosis by various professors.
For our foreign members we are starting already on Friday evening, November 14, with a snack and a drink for an informal introduction.

 Information and registration

Please note that it is only possible to register for this meeting as a physician, member, volunteer or on invitation (for members, the membership fee is paid until 2014).

The report by our Familedag in Netherlands on 28 June 2014 has been published! It was a beautiful day with excellent weather!

Members from all over Netherlands traveled to the Zoo in Amersfoort (various members plm. 200 km one way) to have fun together.

Go to report

More Articles...

  1. 2014 Conference Report
  2. Funding project Youth Education Rare Diseases step further!
  3. CMTC-OVM Canada
  4. CMTC-OVM members meeting NL moved
  5. Washing without water
  6. 2014 Annual Conference Agenda
  7. CMTC-OVM on RTL4/5 television! UPDATE
  8. Make Your Hotel Reservations Now
  9. Eurordis 2014 report available!
  10. USA member meeting registration open!

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CMTC-OVM US meeting 2014

St Louis night expblend

Intro & registration



20:00 - 15.11.2014 21:00
CMTC-OVM member meeting Netherlands

Other CMTC chapters

CMTC as disease is not limited by borders, neither are we.


Promotion CMTC 2010
Promotion CMTC 2009
Promotion CMTC 2007

Promotion CMTC 2005