Patient versions of clinical guidelines

Craniofacial microsomia

ERN CRANIO has developed a European guideline on craniofacial microsomia, which was published in the Journal of Craniofacial Surgery in November/December 2020. 

A version tailored specifically for patients and their families is also available (2021).

Craniosynostosis

ERN CRANIO endorses the updated Dutch guideline on the treatment and management of craniosynostosis (2021). An English version of the guideline on treatment and management of craniosynostosis, tailored specifically for patients and their family has been written by Mariët Faasse (patient representative from LAPOSA) and has been published in January 2023. 

Pierre Robin Sequence

An ERN CRANIO clinical guideline is currently in development. A version tailored specifically for patients and their families will also be developed.