• 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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jezz

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

Is it possible for the body to develop asymmetrically, especially in head to toe dimensions (so where one side of the body develops at a different rate than the other)? What can be done about this?

Yes, this is a possibility although not common and is known as Hemihypertrophy. In certain cases this can be connected with the complication known as primary lymphedema. This is a disorder of the lymph vessels which regulate the fluid balance in the body. With primary lymphedema there are too few lymph vessels to properly drain the body of fluids. As a result, one side of the body can become thicker than the other side.

When should any intervention be considered if there is a difference in leg lengths?

In The Netherlands the guideline is that physical intervention is only appropriate when the difference in leg length is larger than 3cm. In addition, it should be noted that the age of the patient also plays an important role in deciding when to intervene.

Can asymmetry also develop at a later age?

Only during the growth years generally speaking.

 

jezz

Upcoming Events

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

Twitter

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
About 7 hours ago
CMTC-OVM @gatesfoundation We are wondering how much medical and psychological support patients with rare diseases and famili… https://t.co/5wBzzC6R43
About 8 hours ago
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