A patient organization is made for and by patients. This implies that people share knowledge and experiences. The problem - especially with a global organization like ours - is how to establish and maintain contacts. The general member meeting is an excellent way to make contact with other patients. Unfortunately, not all members are able to attend this meeting. This applies particularly to our foreign members.

How do we contact our foreign members and maintain these contacts?

Virtually all foreign members find us through the Internet. Initial communication usually is by email. Later it is often by telephone or video conferencing via Skype. Several global public groups within Facebook have been created, and our website also offers the possibility of sharing information, but it is much safer than Facebook, etc.

Our intention in the Netherlands is to organize an annual family day for the patient and his/her immediate family at 'de Efteling'.  Volunteers are also invited.


Do you need personal advice?

Complete the form below with an attachment (e.g., a photo) if desired.  If you wish to attach multiple files (e.g., multiple pictures) you will need to combine them first using an achival tool (e.g., Zip or Rar). Naturally this information is treated as confidential.


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