A patient association is for and by patients. This implies that people share knowledge and experience. The problem, however, especially with a global organization like ours, is in making and maintaining these contacts. The general members meeting provides an excellent opportunity to make contact with other patients. Unfortunately, not all members are able to attend this meeting. This is particularly true for our foreign members.

Personal contact

How do we explain to our foreign members how to establish and maintain contact?
Practically all foreign members find us via the Internet. The communication therefore is primarily via email or video conferencing (e.g., using Skype). Several global groups have also been formed - mainly via Facebook -  but it should be noted that this falls outside the control of our organization.

Family Day

If our financial situation allows, we organize an annual family day for the patient and his/her immediate family at "the Efteling".  Volunteers are also welcome.


Impression Activities

With special thanks to Mark Knopfler to be allowed to use his music!