The use of ' social media ' is an indispensable part of our society. If you want to be visible, then a presence on social media is crucial. This article describes how we use social media as an organization.

The CMTC-OVM organization uses ' social media ' for various reasons. First, we want to increase our brand awareness with the underlying goal of reaching as many people as possible worldwide from the various target groups. Second, we want to reach our target groups with information on activities, projects etc.
We use a variety of social media channels:

  1. Facebook.
  2. Twitter.
  3. Linkedin.
  4. Youtube.

Within Facebook, we decided to use two groups, in which one group is set up by our organization and one by a patient.. This group aims to provide knowledge and experiences as a patient or a patient's parents to share with each other and to ask questions. Our group decided that for the privacy of the members of this group. Sometimes personal photos are placed where it is not the intention of the person that the whole world can see the pictures. In principle, anyone can log on and may or may not accepted by one of the ' moderators '. People regularly try to gain access to our group with commerical interests in mind, and we try to estimate that in advance as well as possible. When someone does not respect the rules of this group then the postings of this person are removed and the person is deprived access.
In addition to the private Facebook group, we also have a Facebook page. This Facebook page aims not only to share but also specific CMTC business more general information such as on rare diseases in general.

Facebook group adults (closed)

Facebook group young adults (closed) approx. 15 - 25 years

Facebook group children (closed) approx. 8 - 15 years

Facebook page worldwide

Facebook page the Netherlands

We use Twitter for sharing short messages (these cannot be longer than 140 characters) so that we often refer to our website for the whole article.

Twitter is a free Internet service that allows users to publish short messages of up to 140 characters. The use of Twitter is call' twittering ' or ' tweeting ', that chirping means, which is whythe logo of a little bird is used. Before you can use Twitter you must first create an account on the website Use a short user name (also called ' handle ') to make it easy for others to send you a message. It is also useful to fill out a Twitter biography so others know who you are, and it is advisable to add a photo too.
You can follow others accounts' that you find interesting. That means that as soon as that other person sends a ' tweet ' (message), all followers received this message. If you have a lot of people who follow you, it can happen that you lose the overview. You can create lists in your profile and then add the desired people so you can maintain overview. If someone you follow then you will get a message from them here.
If you want to redirect to others than it is called a ' retweet '. Through this mechanism, you can reach a lot of others that are outside your direct range. Twitter uses certain symbols. When you want to send someone a ' tweet ' specific use ' @ ' followed by the person's user name (example of sending a ' tweet ' to our CMTC-OVM organization: @cmtcovm). If you would like to specify a topic then use ' # ' (example: #cmtc).
Use normal phrases and abbreviations as little as possible, because this could make your ' tweet ' be unclear to others.

Our Twitter channel

LinkedIn is a business network where we also regularly post messages. The main purpose of LinkedIn is networking, so you make contact with as many people as possible. Someone should accept your contact request at LinkedIn first before you can see the data of this person. Moreover, that you can see who has visited your LinkedIn profile (at the standard version of LinkedIn this is limited).

We have a series of short films posted on YouTube about CMTC. At the moment it is not already available in English, and we would like to give this English subtitling. We have a movie which is intended as a general introduction. There is also a film intended for patients and parents of patients, and another film for medical professionals. There is also a film meant for schools with the anti-bullying method Kiva explains. Finally, there is one more film to find RTL4 television recordings on which we have worked within the framework of the program LifestyleXperience.

How can you help?
First of all, by sharing knowledge and experience. It turns out that other people regularly can help tremendously. Second, you can ' like ' and ' share ' articles with others (for example, own Facebook friends). You can also "retweet" a message that we send via Twitter by sending it via your Twitter. This will greatly increase our visibility so that more and more people are reached.

How do we work?
Within our global CMTC-OVM, we have basically one person who provides information for our social media channels. There is an exception to this which covers the private Facebook group. The American CMTC-OVM organization will itself regularly posts in this places. The Canadian and global organizations publish articles via our social media consultant. This consultant can be reached via the email address This email address is being protected from spambots. You need JavaScript enabled to view it. (English-language messages). We do not host commercial messages!

At the bottom of each page of our website lists the links to our social media channels.