Unfortunately for me no skirt day ... I dare not to show my legs. I don't go to a swimming pool or sauna. I can't take part in various sports activities. I can't with my girlfriends long shopping.

Every time I have to explain that CMTC doctors, friends and people I meet. Strange looks, staring and gross comments from people when I was a little girl and wore a skirt. People who thought I was abused by my parents!

CMTC is a very rare blood vessel disease whose complications range from cosmetic (bruising) to deadly.

I can not walk or cycle long distances. Regularly I have pain and CMTC limited me in my life. My self-image and self-confidence are not really positive. At school I was bullied because I, for example, gymnastics could not come along. I could not take part in the walking event with my class.

Fortunately, in Netherlands in 1997 an organization was set up by the parents of a girl with CMTC. This organization has members from around the world and is the Centre of excellence. The medical specialists help patients during for example in Netherlands at the annual Global Conference in Netherlands. They are genetic research preparing to the cause of CMTC to figure it out. They bring together patients and parents from all over the world to share knowledge and experiences. Finally meet fellow sufferers and understanding! Finally recognition!

Answers to the many questions that I have. What will my future look like? Should I undergo operations? Can I have a regular job? Can I get healthy children? Will I later end up in a wheelchair?

Donations allow us to develop business such as:

  1. Perform genetic study of CMTC.
  2. Develop new information material. This we develop in many languages so that we can reach and help as many people as possible.
  3. Expanding our website for children (http://jezz.cmtc.nl/nl/)
  4. Expand the Web site where you are using it.
  5. Conducting genetic research with the aim to find out the genetic cause of the emergence of CMTC.

An overview of our activities for 2018

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We are an ANBI organization so donations to our Organization are tax deductible according to the rules in force.
In addition, we also have the CBF quality mark.