Cutis Marmorata Telangiectatica Congenita - Clinical and Patient Support

Clinical and Patient Support

Due to the very rare occurrence of the condition and its apparent neutrality to treatment (CMTC as a vascular, hereditary/gene disorder has no medicinal cure) clinical interest from the medical or pharmaceutcial fraternity has been limited when compared to conditions affecting larger numbers of the global population. As a result, and until recently, much of the clinical research carried out on the disease was either not widely published or accessible and CMTC sufferers, parents and newly diagnosed patients often resorted to independent support networks to seek clinical advice. In Holland, home to Cato van Lohuizen who first described Van Lohuizen Syndrome, Lex van der Heijden is now the President of www.cmtc.nl which is the globally recognised center for online patient and family support with a database of USA and European members.