On Saturday, November 4, 2006, we again held our annual meeting in the Netherlands.

Doctors Orange, van Steensel, and van der Schaar organized a forum during the morning session with the goal of answering as many questions (medical or psychological) as possible.

Some members from the U.K. were present but since virtually everything was translated into English they had no problems following the entire event. The PGB (individual budgets) presentation was specifically for Dutch members, so the British contingent went to a local shopping center in the afternoon to search for christmas presents for their children. Last year they came to the Netherlands (for free) with their children, for an extensive (also free) examination of their daughter - who has CMTC - by Doctor van Steensel.

The forum included two medical specialists and a psychologist (Dr. van der Schaar). This was a deliberate choice, since people with rare diseases often exhibit psychological as well as physical problems.

We asked members beforehand to consider questions they would like to ask. These questions were included in the presentation given during the meeting. Several questions of a psychological nature came up, the most important being "how to deal with stares or questions from people".

In the opinion of Doctor van der Schaar, one should not direct with questions, comments, etc. to a child with CMTC until the child brings it up. In many cases, the parents are more concerned than the child. This is understandable, since you as a parent naturally want to give the best care to your child. Children normally start to become aware of themselves (and any deviations) around the age of six. Doctor van der Schaar's advice was for the teacher and children to have a classroom discussion about the disease and its ramifications when the child is around seven years old. They can include information like the leaflet available on our website. It is also possible to get printed material on request from the chairman of CMTC.

In the afternoon we had an independent expert come to discuss the individual budgets (PGB). The presentation was given by someone from the "Per Saldo" organization who also has a child requiring special care. "Per Saldo" is an organization that represents the interests of people with PGB. An important principle of PGB is that you take the lead and thus are responsible. You yourself arrange much of the care, and this effort should not be underestimated. The PGB is a form of care available through the AWBZ ("the exceptional medical expenses act"), where in fact everyone contributes and thus in principle could make a claim. You could say that PGB is self funding personal care. Many other things like patient transport are covered by PGB.

Presentations (members and doctors only):

 

Impressions