• 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."

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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.

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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.

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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!

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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

Kirsten de Wit, Neurobiology student with a specialization aimed at society at the Free University of Amsterdam, will conduct in the context of its master's degree program a research assignment for our organization CMTC-OVM. She is going to research how we as organization can achieve better results with more patients and better support for doctors. She will include by literature research and interviews of both patients and doctors which will be described in a report. The interviews last about 45-60 minutes and will take place in the period from November 2014 to January 2015. Our members will be asked by email if they want to participate.

She is guided at the Free University by Dr. Theo Groen and from the CMTC-OVM organization by Lex van der Heijden.

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).

More Articles...

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

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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