The reason for the existence of the CMTC-OVM (Cutis Marmorata Telangiectatica Congenita and Other Vascular Malformations) association can be traced back to the birth of the daughter of the president. She came into the world "black and blue". Since none of the midwives in the hospital had ever seen this before, a pediatrician was consulted. He was also unfamiliar with the condition and conjectured that this was a "cosmetic" problem that would disappear over time.

After a few months however, we noticed differences in the circumference of both legs, one of which had the "bruising" and the other of which did not. The leg with the marks was thinner than the normal one.

After many examinations, visits to three university hospitals, and a 'mere' six months after her birth, the diagnosis was confirmed: CMTC. Much research revealed that hardly anything was known about it.

Eventually we turned to the Dutch Patients/Consumers Federation (NP/CF) who advised us to register as contact persons in the Netherlands. We were put in contact (through the NP/CF) with the Skin Federation,  an umbrella organization for patient associations in the Netherlands involved with skin disorders. The Skin Federation advised us at that time to establish an organization for people with CMTC, and they were a great help to us in that regard.

The association was formally established on January 22, 1997 with the main goals:

• To promote the welfare of people who suffer from vascular malformations such CMTC (Van Lohuizen syndrome), particularly its own members, and to promote and develop activities that foster well being.
• The promotion of (scientific) research into vascular malformations such as CMTC, the causes and the treatment thereof, and all that is in the broadest sense pertinent to such activities.

We are registered with the Chamber of Commerce in Amersfoort under number 40508004 V.

 

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As of January 1, 2008, our organization has been recognized by the Dutch tax authorities as an "Institution for Public Welfare". The consequence is that donations and gifts within the Dutch Tax are tax deductible according to the applicable rules.

According to our accountant we spend approx. 95% on our objectives.