As a global organization we want to provide patients, families and health care providers with reliable information and enable them to share knowledge and experience with each other.
Closed Facebook groups are very suitable for this, especially when it comes to rare diseases such as CMTC and other vascular malformations.
Our members who have joined a number of these Facebook groups come from all over the world. Therefore, have a look at our Facebook groups and sign in. Also take a look at our Twitter channel.
We use a number of general Facebook groups and pages and also have a Facebook page in that specific language for each country where a patient advocate is active.
Facebook group adults (private)
Facebook group young adults (private) approx. 15 – 25 years
Facebook group children (private) approx. 8 – 15 years
Facebook pages per country (where a patient advocate is active).
