• 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.

Read more

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

The registration for our global Familydag in the Efteling on Saturday the 6th of July is open! At this very moment we are expecting participants from at least 4 countries.

We start with the reception at 9 a.m., lunch is from 1 p.m. to 2 p.m. and the park closes at 11 p.m so in total 14 hours. The Efteling offers attractions for practically all ages!

The registration closes at the 29th of June.

The registration has been closed.

We are very busy developing a new website that works well on smartphones/tablets, with a lot of news and new functionality! 

On Saturday the 2nd of November 2019 we are organising again our global member conference in the Netherlands. On Friday evening we welcome our guests with a welcome drink and snack. 

Apart from a number of main sessions we also organise 9 parallel sessions (3 blocks of 3) and of course the option for a personal medical advice. 

We also intend to share the results of the CMTC genetic research program during our conference!

Read more: Global CMTC-OVM Member Conference Netherlands 2019

Our international genetic research program started again! In Brussels Prof. dr. Miikka Vikkula is working on this research and in Canada Dr. Millan Patel. 

For more information and possible participation: This email address is being protected from spambots. You need JavaScript enabled to view it.

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.

Subcategories

Family messages

Fotolia 24437363 SBelow you will find obituaries of members of our organization. Their deaths need not be the result of CMTC, M-CM, etc., but in any event the cause of death is not indicated unless requested out of respect for the families.
This list may not be up to date, since we only place an obituary after being granted permission by the family.

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Upcoming Events

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Twitter

CMTC-OVM On Tuesday the 20th of August we will meet families in Bratislava to give them personal support. https://t.co/ZGnzzW0Iyh
About 12 hours ago
CMTC-OVM @DSMeu @e_health_ Interesting! Apart from over 20 years in the global rare diseases world Lex Van Der Heijden has w… https://t.co/Vk0VVCG8LL
Sunday, 18 August 2019 17:04
CMTC-OVM RT @irvinederm: Does the skin have a newly discovered sensing organ? Study suggests complex network of specialised cutaneous Schwann cells…
Friday, 16 August 2019 12:05