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

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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One of our medical advisors, Prof. Dr. Suzanne Pasmans, on February 7, 2014, gave her inaugural lecture held at the Erasmus University in Rotterdam (Netherlands). The title of her lecture was 'short lines in children's dermatology'. Suzanne gave an impressive presentation in the special role of children's dermatology and it was very promising!
At the end of her inaugural lecture, she carried out, along with a number of patients, the official opening of the Skin House.
A crucial note from Suzanne, "Children are not small adults" (this has been said by Prof. Arnold Oranje too often as a children's dermatologist). Treating children with dermatological problems is really different than in adults!


In the Netherlands there are about 1.2 million children per year in which a skin disorder is diagnosed. Common skin diseases are eczema, infections, strawberry spots, birthmarks, diaper rash, and acne. In 20 percent of cases of eczema there is a serious defect that requires care by a specialist, but these patients are sometimes referred too late to a specialist. The correct diagnosis is not written, or a good treatment plan isn't developed, with all its consequences for the child. Moreover, also for the reverse comes, that children unnecessarily are referred to a specialist.

On Skin House parents of children with a skin abnormality do a symptom check. For example, the child has suffered from red spots on the head and has itching, these symptoms are checked and then a list of diseases pops up, with pictures to compare with the symptoms of the child. Parents can then start a treatment with self care resources themselves, or they can determine whether a child needs professional care. Also if a diagnosis is already established, parents can visit Skin House. In a library of alphabetically arranged diseases is reliable information. Parents can read what treatments there are, find out when they should be referred to a specialist, if it can be reduced with medication, and how to do it. Also, all medical guidelines are included. The experience of Suzanne is that parents are excellent partners of professional health care providers. It takes the view that doctors should make better use of them. Every parent or parent can create a file in the Skin House and keep track of the steps he/she has taken during the treatment. This file can then be shared with other treating physicians, annotations can also be made, so that every health care provider knows which route the patient has gone through and what medication has been administered. Skin conditions are often underestimated. Maybe because we feel they are normal because they occur so often. It is important that the training of young medical doctors, general practitioners, and pediatricians in this area improves by having a clear place in their training because the figures are shocking high.
The Skin House is not yet available in English.

The above text is partly copied from the website of Netherlands youth health care Doctors.


Upcoming Events


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


CMTC-OVM On the 19th of September we have participated in the PGOSUPPORT Academy in Utrecht with theme 'impact'. What are… https://t.co/O7q5SYo2h1
Thursday, 19 September 2019 16:53
CMTC-OVM @gatesfoundation We are wondering how much medical and psychological support patients with rare diseases and famili… https://t.co/5wBzzC6R43
Thursday, 19 September 2019 15:46
CMTC-OVM @wegohealth On our new website many personal stories are shared. After a survey it was confirmed that patients and… https://t.co/hgYtoJN51O
Tuesday, 17 September 2019 20:21