Psychosocial support encompasses psychological, social, emotional, and spiritual wellbeing.

This is formed during a person’s lifetime and is influenced by environmental factors as well as factors that are unique to each individual. 

Please see below for guides on psychosocial care for children and adults living with EB. 

Patient Guides

Patient Guide for Children with EB

Support for Parents Caring for a Child Living with EB


Patient Guide for Adults with EB

Support for Adults Living with EB


Support from your EB Team Patient Guide

Support from your EB Team/Healthcare Providers


Clinical Practice Guidelines

Clinical Practice Guidelines for Care of Families

Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guideline


Clinical Practice Guidelines for Healthcare Professionals

Psychosocial guidance for social and healthcare professionals/epidermolysis bullosa (EB) teams