Union
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Elvira 2008
Eventually we ended up at the Dutch Patients/Consumers Federation (NP/CF) that advised us to register as a contact person in the Netherlands. Via the NP/CF a contact was made with the Skin Federation. This is an overall organisation for Patient Organisations concerning skin affections in the Netherlands. The Skin Federation advised us to raise an organisation for people with CMTC and really has helped us with this.
The union is formally raised on the 22nd of January 1997 with its main goals:
The union is formally raised on the 22nd of January 1997 with its main goals:
For information about the Board see the Contact information page.
The Cash committee contains of two members and executes, just like the supplier of subsidy, the annual financial controls.
Last but not least we have medical advisors, Prof. Dr. A.P. Oranje (dermatologist), Dr. M. van Steensel (dermatologist and interface with eg. Prof. Dr. P.M. Steijlen) and Dr. W.W. van der Schaar (medical psychologist).
We are registered at the Kamer van Koophandel (Chamber of Commerce) in Amersfoort with number V 40508004.
The Cash committee contains of two members and executes, just like the supplier of subsidy, the annual financial controls.
Last but not least we have medical advisors, Prof. Dr. A.P. Oranje (dermatologist), Dr. M. van Steensel (dermatologist and interface with eg. Prof. Dr. P.M. Steijlen) and Dr. W.W. van der Schaar (medical psychologist).
We are registered at the Kamer van Koophandel (Chamber of Commerce) in Amersfoort with number V 40508004.
Organisation
The motive to raise this union was the birth of Elvira, the daugther of the chairman and treasurer, in 1993. She was born 'black and blue'. Since no one of the obstetetics in the hospital had seen this before, a child doctor was called. He also had never seen this before and expected that it was a cosmetic problem that would disappear after a while.
After several months however we saw differences in circumference between her both legs on which one had stains and the other not. The leg with stains was thinner in comparison to the 'normal' leg.
Many researches, three academic hospitals and ('only') half a year after her birth the diagnoses was set: CMTC. After many research it appeared that hardly anything was known about this.
The motive to raise this union was the birth of Elvira, the daugther of the chairman and treasurer, in 1993. She was born 'black and blue'. Since no one of the obstetetics in the hospital had seen this before, a child doctor was called. He also had never seen this before and expected that it was a cosmetic problem that would disappear after a while.
After several months however we saw differences in circumference between her both legs on which one had stains and the other not. The leg with stains was thinner in comparison to the 'normal' leg.
Many researches, three academic hospitals and ('only') half a year after her birth the diagnoses was set: CMTC. After many research it appeared that hardly anything was known about this.
| • | To increase the well-being of people who suffer from vascular malformations like CMTC ('Van Lohuizen syndrome'), especially her own members, and stimulate and develop activities that could increase this well-being. |
| • | To stimulate the (scientific) research regarding vascular malformations like CMTC, the causes and the treatment of them and everything that is related to them in the broadest sense. |
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