• 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.

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


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

As patient organisation we are processing personal data. We are dealing with these data carefully and we are following the European requirements in the field of data protection.

An example of use of personal data are your name and email address during registration as member or for registration to participate in our Familyday or Conference.


New Data Protection General Regulation ACT

Per 27 April 2016 the new European privacy laws come into force and until 25 May 2018 the EU countries have the time to implement this legislation into their national legislation. This new law is called General Data Protection Regulation (GDPR) (click here for the legal text) and replaces the Dutch personal data protection Act (Wbp). From that moment the standard applies to structural and effective measures against negligent processing of personal data. In Netherlands is the pivot in this whole organization Authority Personal data.

Important documents:

  1. Statement This is a statement of our Organization on the processing of personal data by our Organization.
  2. Inspection Scheme everyone has the right to ask us which data has been recorded about this person. At minor children (under 18 years in Netherlands) can also the parents/guardians.

For questions please contact the president via This email address is being protected from spambots. You need JavaScript enabled to view it.This email address is being protected from spambots. You need JavaScript enabled to view it. 


The Association respects the privacy of all its members/patrons and the users of its website and ensures that the personal information you provide will be treated as confidential.

The Association is not responsible for the privacy practices of other sites that are accessible via a link to this Web site. You can consult the privacy policies of those other sites by their privacy statements.

Processing of personal data by our Organization
If you log on as a member or supporter of our Association, we ask you for personal information. This information is stored in our administration and are used to provide our services to you and to inform you about our meetings and activities.

Your data may also be used to you through newsletters or otherwise with information about products and services of third parties which are the subject of our Association. Your email address will only be used if you give us permission. You can stop receiving this information always on the methodology specified in the mailings (opt-out).

Your personal data are in principle used only by the Association. We provide your information to third parties unless we are required to do so by law or court order, if you have consented to that disclosure or provision is necessary for the performance of a contract between you and our Association.

You always have the ability to change your personal data, or removed. You can do via This email address is being protected from spambots. You need JavaScript enabled to view it. to request the inspection procedure is laid down in an arrangement that you can find on our Web site and which is from This email address is being protected from spambots. You need JavaScript enabled to view it.

The Association shall retain your personal information longer than is necessary for the purposes for which they are absorbed and used in the administration. Your personal information will no later than one year after termination of your membership of the Association from the Administration be removed.


  1. Anyone whose personal data are included in the administration of the Association have the right of access to that data. This applies only to personal data of the person concerned, information from other involved will not be provided for inspection. A data subject may file a request for access to personal data on several occasions, but not unreasonable often. If nothing has changed since the previous request, the inspection will be refused.

  2. A request for access must be submitted to our Board via This email address is being protected from spambots. You need JavaScript enabled to view it.. The Board will request within four weeks after receipt of the data subject to provide a summary of any personal data that have been processed, the nature of the processing, and the purpose for which the data are processed. Also will be featured or data to third parties are provided and if so, to which third parties and for what purpose that provision has been made.

  3. The one of the Board an overview of the processing of his personal data, then the Board can ask to improve some of the information, to complete, to delete or to shield. This request will be granted if the information is incorrect or incomplete, or not relevant to the purpose for which they are processed.

  4. The Board decides within four weeks on a request for correction, modification, deletion or blocking of personal data. If the application is granted, the Board that the improvement, alteration, removal or blocking is implemented as soon as possible. If the request is refused, the refusal is communicated to him in writing, stating the reasons for the rejection.

  5. If the person concerned is the processing of his personal data incorrect eight because it the interest of the Association or of a third party is served, while the importance of privacy of the person concerned had should take precedence, the data subject may, in writing, to the Board in opposition to the processing.

  6. The Board must assess the resistance within four weeks of receipt. If the Board considers the opposition is well founded, it ensures that the processing of the data is terminated as soon as possible. If the Board the resistance considers unfounded, the person concerned may within six weeks after receipt of a complaint that decision.



Personally identifiable information you provide on this website, we use only for the purpose for which you have given them. In addition to registration for our website, we also have a separate registration for our members/donors and financial administration.

How do we deal with your personal data?

We use your personal information only for the purpose for which you she has left behind. To your application for access to our website (for example, as a member) to be able to process, you are prompted for a number of data available. Should you also in the future (News) posts by CMTC-OVM like to receive then you can indicate on the registration form that your personal information, such as your name and email address to use for this too.

Who has access to your information?

Access to the website registration is reserved for Board members and the webmaster.

See, modify, or delete data

You have the right to see your personal information, to correct or remove it. You can send a request for access, correction or deletion to This email address is being protected from spambots. You need JavaScript enabled to view it.

How long will your data be stored?

CMTC-OVM saves personal data no longer than is necessary for the purpose for which you have left behind. After the data is destroyed. When you indicated (News) to want to continue to receive messages of CMTC-OVM then your details will be recorded. You can indicate your data no longer interim. You can do this by sending an email to This email address is being protected from spambots. You need JavaScript enabled to view it.


For questions or comments about the processing of your personal data please contact: This email address is being protected from spambots. You need JavaScript enabled to view it.

The European data protection General Regulation (AVG) gives stakeholders a number of rights which we of course.

The AVG:

  1. Puts more responsibilities in the organisation that processes personal data ("controller").
  2. Protects and strengthens the rights of the individuals whose personal data are processed (data subjects).
  3. Gives the supervisory authority, the authority personal data, more powers, including the power to high penalties.


Processing in charge: the organization that the aim and the means of the processing of personal data. In this context, this global CMTC-OVM organization in Netherlands.

Processor: a third party that processes personal data on behalf of the controller. Examples are: the editor of the newsletter, the company that the members and financial records and the company where our website is ' hosted '. But also the volunteer who gets a members to organize an activity file.

Personal data: any data about an identified or identifiable natural person. For example, name, address, telephone number, email address, or IP address.

Person concerned: the identified or identifiable natural person, for example the members, patients, but also donors or volunteers.

Data on health: personal data relating to the physical or mental health of an individual. Health records are sensitive personal data. To the processing of these sets the AVG more stringent requirements.

Data subjects ' rights

The rights of people who log on to us (eg. as a member, donor and receive news letter) are as follows:

  1. The right to information on and access to the processing of the data of the person concerned.
  2. The right to correction or restriction of the personal data.
  3. The right to be forgotten (' oblivion '); the person concerned has the right to ask us to delete his/her personal data (including the removed any other organizations to which we disclosed it).
  4. The right to dataportabiliteit; data subjects can ask us to receive their personal data in a standard format and/or forward to a new organization.
  5. The right to object to profiling and automated decision making.

When a person concerned is of the opinion that we do not cope well with personal data than the data subject may file a complaint with us by sending an email to This email address is being protected from spambots. You need JavaScript enabled to view it..

In case the data subject considers that we are/not correctly handle her complaint than the data subject may lodge a complaint with the Authority personal data on how our organization with personal data. The personal data Authority is obliged to this complaint.



Upcoming Events

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About 7 hours ago
CMTC-OVM On December 8 we helped organize and participated in World Light Day in the Netherlands. Every 2nd Sunday in Decemb… https://t.co/TS1xLAi5Tg
Monday, 09 December 2019 14:29
CMTC-OVM RT @inesernando: More than 800 HCPs have applied to join the ERNs. The final number will be known by the end of 2020. Geographic coverage…
Friday, 06 December 2019 19:00