• 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

From 25 May 2018 every European organization that deals with personal data must comply with the new 'General Data Protection Regulation' (GDPR). Our organization also has to comply to this legislation.

 

What is this law and why is it new?

Companies, governments, non-profit organizations etc. increasingly process large amounts of personal data. For example: medical data, financial data, data about search behavior on the internet. In addition, in this time with super-fast technological developments everything can be digitized and all data can be connected to each other. So it is very important that these data remain well protected.

 

New law badly needed

The new European General Data Protection Regulation (GPDR) is the successor of a European directive from 1995, which was implemented in the Netherlands in the Personal Data Protection Act. Other European countries also have their own privacy legislation. All this legislation will be canceled; the GDPR will become the only privacy law from May 25, and people can directly rely on it.

A new law was badly needed. Internet was still in its infancy at the time the old law was established. Search engines did not exist yet. The GDPR has been adapted to the current digital age. Since the digital society has no borders, the GDPR applies to the entire European Union and it offers an equal level of protection for all citizens. Organizations are made more aware of their responsibility to handle personal data carefully. This means that organizations must be able to demonstrate with documents that they have taken the correct organizational and technical measures to comply with the GDPR. This law also comes with an incentive to comply: serious fines for violation.

We are working hard to comply with these regulations. It means that we will soon approach you to fill in your details again.

 

Interesting links:

General information about the GDPR law

Read more about how to deal with the new US-EU data regulations

Read more about business consequences of the GDPR

More information

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Upcoming Events

Nov
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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
Thursday, 19 September 2019 16:53
CMTC-OVM @gatesfoundation We are wondering how much medical and psychological support patients with rare diseases and famili… https://t.co/5wBzzC6R43
Thursday, 19 September 2019 15:46
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