CRANIO ERN is the European Reference Network for rare and/or complex craniofacial anomalies and ear, nose and throat (ENT) disorders. Most of them are exclusively cutaneous/sub-cutaneous and often present a severe prognosis, because of the intensity of the cutaneous/mucosal involvement, the risk of cancer for some of them, or the frequent multisystemic involvement directly or secondary to skin damages. MOLGENIS delivers on their patient registry