PALLATIVE AND
END-OF-LIFE CARE

Guideline objectives: EB patients live with an  incurable and potentially life-limiting condition with challenges posed by its symptoms. It was deemed necessary to develop evidence based, best care guidelines for a palliative approach to EB.

The guidelines focus are on easing suffering while improving comfort and quality of life.   

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Target users: All medical providers who are part of an interdisciplinary EB team (IDT), in particular those without a palliative care expertise or access to extended support of EB specialists in their area. EB patients, their families, carers and the community.

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“I truly hope and believe that this paper will not only help those living with EB and their carers, but also inspire researchers to do more work in the study of palliative and end-of-life care for EB.”

– Mark Popenhagen, Lead Author.

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