• 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 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

On July 5, 2014. the CMTC-OVM US Organization held their annual conference. This years conference was held in St. Louis Missouri for the second consecutive year. The conference was held at the conveniently located Hilton St. Louis Airport hotel, adjacent to Lambert St. Louis International Airport (STL). There were registered participants from 7 states and 3 countries in attendance this year.

The general session was opened by Becky Gallis, CMTC-OVM US President. Following a brief welcome and time of orienting the group to the location of the medical evaluations, things were underway with the first presentation.

Read more: 2014 Conference Report

The funding of our project Youth Education Rare Diseases is a big step further thanks to the participation of Fonds NutsOhra! The total project budget is € 113.665 and already 44,200 (appr. € 39%) is financed! What sponsors want more to participate in this project with very high visibility opportunities with some 11,000 Dutch schools? Our immediate target group consists of 800,000 pupils and 1,500,000 parents!
More information: This email address is being protected from spambots. You need JavaScript enabled to view it. .

More Articles...

  1. CMTC-OVM Canada
  2. CMTC-OVM members meeting NL moved
  3. Washing without water
  4. 2014 Annual Conference Agenda
  5. CMTC-OVM on RTL4/5 television! UPDATE
  6. Make Your Hotel Reservations Now
  7. Eurordis 2014 report available!
  8. USA member meeting registration open!
  9. OVM part published!
  10. Eurordis Berlin 2014

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CMTC-OVM US meeting 2014

St Louis night expblend

Intro & registration



09:00 - 09.10.2014 17:00
ICORD meeting Netherlands


08:00 - 22.10.2014 17:00
NORD meeting USA


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