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Palliative care

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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RECOMMENDATIONS ON END OF LIFE CARE FOR THOSE LIVING WITH  EPIDERMOLYSIS BULLOSA: A CONSENSUS-BASED GUIDELINE

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Published 2023 | Funded by DEBRA UK

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Topics covered in these guidelines include:

  • Symptom management 

  • Mental health

  • Grief

Download your copy!

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COMING SOON...

Palliative and end-of-life care patient guides

Am Heumarkt 27/1 | 1030 Vienna | Austria

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DEBRA International is a charitable Association registered in Austria (ZVR 932762489)

© 2023 DEBRA International. All rights reserved. Disclaimer: any and all medical information provided by DEBRA International on this website is for informational purposes only. Information is not intended to substitute the care and guidance given by a qualified physician or other allied healthcare professional. Always seek the advice of your physician prior to starting any medications or treatment regimens. DEBRA International does not endorse any drugs, tests, or treatments that we may report.

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