My granddaughter (who calls me Mom) was diagnosed with KTS at birth. This was changed to CMTC (Cutis Marmorata Telangiectatica Congenita) at 18 months. She later had Proteus added to the list of her conditions and was diagnosed most recently at the age of 11 with CLOVES. When she was born I returned to school to earn my nursing degree and am currently her private-duty nurse. As a registered nurse, I’ve had the opportunity to assist parents/patients with the understanding and interpretation of medical terminology regarding their individual case. As the president of the Global CMTC-OVM US Organization, I have shared in the connection of bringing patients and their families together with experienced physicians in their search for answers. We believe, “We’re all a little rare; but, when we fall into mutual rareness…We Call It A Family!