• 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!


Register as member

Our team of medical advisors has expanded! We are proud to announce the addition of Dr. Millan Patel from Canada to our team. He has already been involved for several years in our organization in the field of the genetic research program to find the cause of CMTC.

Millan Patel is a clinical assistant professor in the Department of Medical Genetics at the University of British Columbia and works as a clinical geneticist at BC’s Children’s and Women’s Hospital in Vancouver, Canada. He has research experience in Drosophila, mouse and human genetics. He is a co-founder and Research Director for the Rare Disease Foundation and has a passion for promoting research as a way to improve care for families in the rare disease community. His current research interests revolve around finding the genetic causes for Adams-Oliver syndrome and CMTC.

All medical advisors


Upcoming Events


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CMTC-OVM Today we have met two families in Bratislava (Slovakia) for personal support. Answering lots of questions and con… https://t.co/eEVOR7ZGAu
About 4 hours ago
CMTC-OVM @cmutena Currently in Bratislava https://t.co/3GDBCKbYZr
About 9 hours ago
CMTC-OVM @SociaalWerkNL Succes Véronique!
About 16 hours ago