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NEW! Neonatal Care in EB: a Clinical Practice Guideline now published

We are delighted to start 2024 with the exiting news that the "Neonatal EB Care: A Clinical Practice Guideline" has been published!

This guideline highlights management priorities in neonatal EB care and provide clinicians access to recommended treatment and preventative care options. The guideline outlines diagnosis and parent psychosocial support, hospital management: medical monitoring, wound care, and pain, feeding and nutrition, discharge planning and EB education.

Please note: The final typeset article will be published in due course.

Neonatal hospital implementation tool: an example neonatal hospital admission guide is also available to download for free. This document provides guidance to support clinical judgment of trained health professionals within a hospital environment, and communication between treating hospitals and EB specialist teams. This tool can be used in conjunction with the recommendation tables from the neonatal EB clinical practice guideline.

We would like to congratulate the entire guideline development team on their achievement and also thank everyone who contributed to this work. We would like to thank DEBRA UK for funding the guideline publication. It is a great resource, which will help many people and their families living with EB around the world. The guidelines are available to download for FREE here: Neonatal (


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