• 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!

 

Register as member

On Saturday the 6th of July we are organising our international Familyday in the Netherlands! Our members have seleted again the Efteling. The event starts at 9:00 am until 23:00 pm so 14 hours of fun and meeting other patients and parents.

The registration starts in April.

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Upcoming Events

Oct
18

1010:1010 18-10-2019 - 1111:1010 23-10-2019

Nov
1

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

Nov
9

0505:1111 09-11-2019 - 0505:1111 14-11-2019

Twitter

CMTC-OVM RT @RareDiseases: Will Lewis (@Insmed) on patient involvement: “It's the passion, it's the north star, it's why we get out of bed every day…
About 3 hours ago
CMTC-OVM RT @julievraskin: “There is a science of luck. I am lucky to work on what I am most passionate about in the whole world! A cure for Angelma…
About 3 hours ago
CMTC-OVM RT @timturnham: Panel on affordability: 40% of money spent on drugs is lost to the supply chain. The money doesn’t go to drug companies, a…
About 4 hours ago