Global CMTC-OVM (since 1997)

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 Lex van der Heijden. She was born '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," says Van der Heijden. One of the legs had stains and the other had 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. At that time hardly anything was known about this condition.

 

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

 

1. To promote the welfare of people who suffer from vascular malformations such CMTC (Van Lohuizen syndrome), particularly its own members, 
2. To promote (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..

 

On our website you can find a lot of information. We not only organise a global member conference and Familyday but we also have information available in multiple languages. 

We are performing genetic research as well in different countries.

We not only offer personal medical advice but also we support patients and families psychosocially. During our global member meeting and Familyday patients and parents get connected. 

OUR WEBSITE CONTAINS COMPREHENSIVE AND UP-TO-DATE INFORMATION.