On November 3, it was time for the meeting in the Netherlands. Lex started with an overview, especially for the new members, discussion what we have undertaken and achieved in recent years. What we have achieved might be considered "much", especially internationally. We are one of the smallest organizations with global visibility.
For example, a part of our CMTC poster was used in the brochure of the European Organisation for Rare Diseases (Eurordis).
After the association affairs were discussed, it was the turn of Doctor van der Horst. Unfortunately she was unable to give the presentation herself due to a broken leg, but she had brought a colleague, Charlene Oduber, who quite admirably filled in for her.
In the meantime, Doctor Orange (one of our medical advisors) arrived. He, together with Doctor van der Horst and Charlene Oduber would moderate a forum for all sorts of questions.
Prior to the meeting the following questions were submitted:
- Can asymmetry also develop later in life ?
- Di frequent nosebleeds have anything to do with CMTC?
- For CMTC in the face or head: is an MRI necessary?
- Can MRI cause cancer in later life?
- Does CMTC have a negative impact on life expectancy?
- What is the relationship between CMTC, psychological stress and the immune system?
- How to deal with leg length differences (stunted growth)?
After the forum we had an excellent lunch and some parents and children visited the zoo in Amersfoort. This was a big hit and the kids enjoyed themselves.
During the lunch Doctor Orange was busy answering questions from parents about their children and proper diagnoses. A separate private room had been arranged for just this purpose. This was greatly appreciated by the attendees, especially one family who had joined our organization just a few days before the meeting.
After lunch, our psychologist (Dr. van der Schaar) conducted an interactive meeting. Many topics were discussed during the roundtable session. Of particular interest to parents of very young children were the experiences shared by the parents of older children with CMTC.
Presentations (members and doctors only):