This Group has been started mainly for one reason. To bring people together that have a loved one with Cutis marmorata telangiectatica congenita (CMTC) commonly called 'Van Lohuizen syndrome'. Share our thoughts, experiences, information, and Stories. It doesn't have to be your child, your grandchild, or even a relative. If there is someone that has touched your life in some way and you want to learn more about what they are facing please join us. Trying to pull together a support group for such a rare condition can be difficult. But, in doing so, we may educate, touch the lives of others, and possibly spread the knowledge and awareness that Lex and the CMTC organization has helped us achieve & that could help children for years to come. Please join us in making a difference. Please Visit www.cmtc.nl and support their organization if you are able to. Their good deeds are a life saver to so many people that have no where else to turn. Other Syndromes/Conditions that are commonly discussed are KT, Vascular Birthmarks, Proteus, BWS, Hemihypertrophy, Hemiatrophy, Kidney Reflux, LLD, & More.


Note:This board is not intended to give and/or replace medical advice, Please consult your Doctors for that information. If your Child has CMTC consider visiting www.cmtc.nl for more information. Although alot of our members belong to the Netherlands group we are a Support group for emotional support only and to share experiences and stories for anyone on the web and is a public forum with no medical doctor's backing, take the information as is not for medical diagnoses or advice.
(Spam & Flaming will not be tolerated)