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Welcome to the site of people with the 'Van Lohuizen syndrome'. The 'Van Lohuizen syndrome' is a rare skinaffection that is also known under the Latin name Cutis Marmorata Telangiectatica Congenita (CMTC).
This website doesn't only offer general information that is open for public, but also information that is open only for a select group. Within this group we distinct members and doctors. We provide newsletters, information of patients (ofcourse after approval of those involved), 'cases' and translated medical articles. Doctors have access to e.g. the newsletters, 'cases' etc. with the comment that this information is stripped of any personal data like names and addresses.
CMTC has a wide range of possible complications therefore we offer our members the possibility to start and maintain a subgroup which allows usage of our facilities, (medical) contacts etc. An example is 'macrocephaly-CMTC' (M-CMTC). This complication is characterised by a large head and developmental delay.
We offer our members from all over the world a free medical examination in the Netherlands. We know ways in certain cases how to arrange two free airfare tickets. Sofar members from Australia, Canada, Croatia, Denmark, England, Greece, Italy, the Netherlands, Norway and the USA have used this facility.
Concerning the confidentiality of the medical data that we have in pocession, we are registered at the Registration Chambre and obeying the Wet Persoonsregistratie (translated: the Law on Personal Data Registration).
All documents, presentations, forms, etc. will be available shortly in Adobe Acrobat format. This free software to view, print, etc. these documents can be found on the website www.adobe.com.
Welcome to the site of people with the 'Van Lohuizen syndrome'. The 'Van Lohuizen syndrome' is a rare skinaffection that is also known under the Latin name Cutis Marmorata Telangiectatica Congenita (CMTC).
This website doesn't only offer general information that is open for public, but also information that is open only for a select group. Within this group we distinct members and doctors. We provide newsletters, information of patients (ofcourse after approval of those involved), 'cases' and translated medical articles. Doctors have access to e.g. the newsletters, 'cases' etc. with the comment that this information is stripped of any personal data like names and addresses.
CMTC has a wide range of possible complications therefore we offer our members the possibility to start and maintain a subgroup which allows usage of our facilities, (medical) contacts etc. An example is 'macrocephaly-CMTC' (M-CMTC). This complication is characterised by a large head and developmental delay.
We offer our members from all over the world a free medical examination in the Netherlands. We know ways in certain cases how to arrange two free airfare tickets. Sofar members from Australia, Canada, Croatia, Denmark, England, Greece, Italy, the Netherlands, Norway and the USA have used this facility.
Concerning the confidentiality of the medical data that we have in pocession, we are registered at the Registration Chambre and obeying the Wet Persoonsregistratie (translated: the Law on Personal Data Registration).
All documents, presentations, forms, etc. will be available shortly in Adobe Acrobat format. This free software to view, print, etc. these documents can be found on the website www.adobe.com.
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"Our activities are aimed at the well-being of people who suffer from vascular malformations like CMTC ('Van Lohuizen syndrome') and to stimulate the scientific research of these afflictions."
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Word ook lid!
Voor slechts € 25,00 per jaar bent u lid met vele voordelen.
Voor slechts € 25,00 per jaar bent u lid met vele voordelen.
Become a member!
For only € 25.00 a year you can be a member and enjoy all the advantages.
For only € 25.00 a year you can be a member and enjoy all the advantages.
The 6th of November our annual member meeting will held in The Netherlands.