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Craniosynostosis is one of the disease groups within ERN CRANIO that covers a wide range of craniosynostosis, both unisutured and multisuture craniosynostosis fall under this group.

What is craniosynostosis?

Craniosynostosis is a condition in which one of more of the cranial sutures close too early. Cranial sutures are required for molding of the head during birth and for rapid growth of the skull in the first few years of life. Too early closure of suture(s) will results in an altered shape of the head and hamper normal growth of the brain. 

Craniosynostosis occurs in 1 in 2100 to 1 in 2500 births and may be either non syndromic (also referred to as isolated) or syndromic. 

ERN CRANIO endorses the European clinical practice guideline on craniosynostosis, created within the ERN CRANIO network. The guideline describes the treatment and management of craniosynostosis. A patient and family-tailored version of the professional guideline has been developed by one of the ERN CRANIO patient representatives.