The CMTC-OVM online Community

The CMTC-OVM online Community
Rare Diseases
Member News

The global CMTC-OVM organisation has its own online Community. The main reason is the misuse of personal data by eg Facebook and Google. This application is running on a secure and GDPR compliant environment. What does this application offer you?

This is the fifth article of the Dutch global non-profit patient organisation for patients with CMTC and Other Vascular (bloodvessel) Malformations, their families and healthcare providers.

This edition we discuss our online Community. 

Why do we have our own online Community? The reasons for this are mainly:

  • Facebook repeatedly misuses users’ personal data. In our case, it often concerns highly personal data. We believe this is inadmissible.
    This film shows what tech giants like Facebook are doing to us: 
  • In line with the previous argument: European privacy legislation (GDPR) does not allow personal data to be stored on computers outside the European Economic Area.  Facebook stores data on computers in the USA and these computers do not comply with European privacy legislation.
  • We realise that not everyone has a Facebook account (any more).  The younger generation is less likely to use Facebook than their older counterparts.
  • We want to offer people the opportunity to make contact with other patients and families in a safe way.
  • Facebook regularly changes rules such as restricting the use of medical items, this limits our use. We want to offer a sustainable and reliable solution.
  • Searching in a Facebook group is not really optimal. Our website offers a good search function.

What can you do in our online Community? 

Within our online Community, we work with groups so that the information can be classified and therefore easier to find. We have one public group that is accessible to everyone. If you want to read and/or post messages in this public group, you must register. This group is also managed, which means that posts are viewed before they are published. We want to prevent all kinds of commercial and other unwanted messages from appearing in this group.

All other groups are only accessible to our members. Members automatically have access to all groups.

We offer the following functionality:

  • Create your own profile.
  • Post photos.
  • Create and participate in groups on a variety of topics.
  • Creation of public messages.
  • Send private messages to other users.
  • Tracking other users and blocking profile information.
  • Communicate “real-time” with other users.
  • Befriend other users (in a similar way to Facebook).
  • Highlight website content.
  • You can share your location which allows other members to see you as well in the member list.
  • And much more!

The next time we will discuss personal stories. 

For more information:


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