First meeting CMTC USA, in Edgewater, Maryland.
After a long journey, Lex arrived at the hotel and was picked up by two of our members. They are the grandparents of a girl with CMTC. They were warm and hospitable and provided some very nice snacks.
Lex brought “stroopwafels” for all the members. This is a typical Dutch treat, consisting of two waffles with syrup in between.
Three children with CMTC also attended.
Lex gave a presentation – also available on our website in the members section – from which information and experiences were exchanged.
The problems that were discussed are actually identical to those that we as an organization encounter in the Netherlands and other countries:
- Does the physician with whom you’re dealing actually know anything about CMTC ?
- How much time and understanding does the doctor have for someone with a rare disease?
- Where can I find information about CMTC?
- What is our future, especially for the patient, and what can we expect?
Based on both personal knowledge and experience and that of other members abroad (particularly in the USA), it appears that there are certain doctors in the Netherlands with knowledge and experience in the field of rare vascular abnormalities such as CMTC.
