• 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!

Read more

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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!

 

Collaboration is crucial, and that is especially true in our rare diseases world!

We have again made contact with a number of organizations and work as much as possible together. This includes sharing knowledge, information and experiences. For example, the cardiovascular group a practical article about communication with a doctor. This enables us to reuse, customize and make available also in English.

Recently we have started collaboration with:

  1. Heart and Vascular group Netherlands As the name implies, this is a Dutch organization that all the information and website is available only in Dutch.

  2. LGDA-E This organization focuses on people with Lymphangiomatosis & Gorham's Disease in Europe.

  3. The Hecovan working group, Centre of Expertise for Hemangiomas and congenital Vaatmal formations This is a multidisciplinary team in the Radboud University Medical Centre in Nijmegen (Netherlands).

  4. Noonan syndrome Noonan Syndrome Foundation represents the interests of every Dutchman with the Noonan syndrome or related syndromes CFC, Costello and Leopard.

 

Register

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Upcoming Events

Nov
3

0808:1111 03-11-2017 - 1111:1111 04-11-2017

May
10

0909:0505 10-05-2018 - 0505:0505 11-05-2018

Twitter

CMTC-OVM RT @eurordis: New! Our infographic on social impact of raredisease, the focus of today's launch event ParliamentAdvocate4Rare https://t.…
About 16 hours ago
CMTC-OVM The number of participants for our global conference in the Netherlands has crossed the 100 border! Registration un… https://t.co/NaRmoLiioe
About 16 hours ago
CMTC-OVM Meeting Peter Saltonstall during the NORD conference in Washington DC again. https://t.co/wzvTg3QMSu
Tuesday, 17 October 2017 13:36