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Patient-tailored guidelines

For some rare or complex conditions, there are no clinical guidelines available at present. For some diseases, these are available but some may require review and revision. There can be significant variability in the quality of existing clinical guidelines.

ERN CRANIO seeks to endorse, develop or revise existing clinical guidelines to ensure clinical recommendations are made available to clinicians, patients and their families/carers based on research of the highest quality. 


ERN CRANIO endorses the updated Dutch guideline on the treatment and management of craniosynostosis (2021) [in English].A version tailored specifically for patients and their families is available in Dutch and English. 

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