Adults (18+) living with any type of EB or adult family members of children living with EB, are invited to discuss their experiences of nurses treating a wound that has lasted more than four weeks in online workshops via Zoom. Personal experiences will help the researchers to develop a better project to understand the values and behaviours that are important when nurses are providing care. An online workshop at the end of 2023 will provide feedback and invite participants to shape the questions for a research project planned by King’s College London and John Hopkin’s University (USA).

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