• Mission
  • Activities
  • Member meeting NL
  • Family day
  • Children's website
Mission

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.

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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!

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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!

 

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What is CMTC actually?

CMTC is the acronym for the Latin name Cutis Marmorata Telangiectatica Congenita. Translated into English this means a birth defect affecting the blood vessels that is visible as areas of marbled skin. The alternative name for this condition is Van Lohuizen syndrome. The Dutch paediatrician Van Lohuizen first described the syndrome in 1922. Internationally, both the names CMTC and Van Lohuizen Syndrome are in use. People affected by CMTC have in common that one or more areas of their skin are marbled. Generally this affects the limbs, sometimes the torso and less frequently the face. The condition is not limited to the skin however as this can also occur with defects in other tissues: too thin, too thick or too short bones; thin muscles and also some level of intellectual disability can be present. CMTC can also occur in the context of other syndromes, in which case it is itself a symptom.

Is CMTC life threatening?

CMTC is not life threatening. In fact, as far as is known to date 5 children have died from complications which can occur with certain syndromes in combination with CMTC. These then concerned the presence of syndromal CMTC.

What is the cause of CMTC?
It is thought that CMTC comes about through a fault during cell division in the unborn embryo. Each new life starts as a ball of cells that grows into an embryo. In an embryo a number of distinct layers can be identified and the cells of each of these layers later develop into the varied multiplicity of organs and tissues from which we exist. When a fault occurs in the layer known as the mesoderm then there is a chance that all tissues and organs that develop from this layer are affected. So aside from the skin, bones and muscles can also display abnormalities. When the genetic fault develops relatively late in pregnancy then only the skin will be affected. The fact that abnormalities frequently only occur on one side of the body supports this theory as to the cause.

jezz

Upcoming Events

Nov
1

0808:1111 01-11-2019 - 1010:1111 02-11-2019

Twitter

About 3 hours ago
CMTC-OVM @eurordis We did nominate a very special young woman from the UK!
About 18 hours ago
CMTC-OVM We are on tour again in the USA! 28 - 29 September Atlanta 1 - 7 October Denver 8 - 16 October San Francisco 18 -… https://t.co/V15UoEuIRS
Wednesday, 17 July 2019 10:12