• 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!

 

Register as member

My child with CMTC is being bullied. How can I best deal with this?As a parent, how can I prevent such problems?

  1. Involve their teacher(s) and ask if you can provide information to all the pupils in the form of a talk either by the child or by the parents. An important point to bring over is that CMTC is not infectious.
  2. Allow the class to ask questions so as to create a dialogue on the subject.
  3. Ask pupils to help when other people are bullying.
  4. Investigate whether pupils also have or have had similar problems.

A “patch school” (this facility is offered at the University Hospital Rotterdam) from a psychologist can help.

The grandparents give the child with CMTC extra presents and attention in comparison with the other children. How should I respond?
Raise this issue with the grandparents and explain that they are in fact strengthening the “patient” role of the child and their disadvantaged position in comparison to the other children. In this way the child will not be able to build self-confidence and the other children will learn to display similar behaviour in order to gain equal attention.

The child with CMTC does not appear to have any issues but as parent I do. I consider as a parent that the CMTC patches are unattractive on his/her body. How can I deal with this in practice?
The parents can best adopt a “WE” approach. In other words, both parents need to agree with each other how to deal with this. Ask for help if needed from a paediatric psychologist that also has children.

When is the best time to discuss CMTC with the child? Should I as the parent take the initiative or can I better wait until the child asks questions?
Do not start the discussion yourself. Let the child do so first if possible, as otherwise it may appear that the child is the one solving the issue that the parents have with their view of the child’s disorder. Above all, the child may also ask questions that the parents have not yet thought about because the child has other priorities.

What is the influence of stress on CMTC?
There has been no scientifically proven link found.

 

jezz

Upcoming Events

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

Twitter

CMTC-OVM On Tuesday the 20th of August we will meet families in Bratislava to give them personal support. https://t.co/ZGnzzW0Iyh
About 12 hours ago
CMTC-OVM @DSMeu @e_health_ Interesting! Apart from over 20 years in the global rare diseases world Lex Van Der Heijden has w… https://t.co/Vk0VVCG8LL
Sunday, 18 August 2019 17:04
CMTC-OVM RT @irvinederm: Does the skin have a newly discovered sensing organ? Study suggests complex network of specialised cutaneous Schwann cells…
Friday, 16 August 2019 12:05