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  1. Healthcare professionals
  2. Clinical Practice Guidelines

Clinical Practice Guidelines

Doctor checking someones pulse

Clinical practice guidelines (CPGs) are a set of recommendations for clinical care, based on evidence gained from medical science and expert opinion.

CPGs help professionals understand how to treat someone with EB. DEBRA International has produced many useful guidelines over the years, and we typically fund two guidelines each year (denoted with an asterisk* below).

Download the CPG fact sheet to learn more about how CPGs are developed.

Current guidelines

These clinical practice guidelines are developed for professionals managing EB patients; however, there is also a library of patient versions available for people living with EB, their family, friends and carers, which can be found in the Knowledge hub.

Cancer management

DOWNLOAD

Constipation management*

DOWNLOAD

Foot care*

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Laboratory diagnosis

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Occupational therapy

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Oral health care*

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Pain care

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Physiotherapy

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Pregnancy, childbirth & aftercare

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Psychosocial care

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Skin & wound care

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Supporting sexuality

DOWNLOAD

Published: 30th October, 2020

Updated: 3rd May, 2022

Author: Stephanie Webb

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    Find information about the EB research projects we currently fund.

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    Emergency contact information and downloadable 'I have EB' cards to carry with you to inform healthcare professionals that you may require specialist care. Find out more on emergency information for EB patients.

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    Resources for healthcare professionals

    This page includes relevant resources for clinicians and healthcare professionals treating and managing EB patients. Please visit the knowledge hub for resources relevant to non-medical professionals.

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    Learn directly from expert clinicians and healthcare professionals. DEBRA sponsors a wide range of events for professionals to advance their knowledge and skills in EB.

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    Working in partnership with the NHS to deliver an enhanced EB healthcare service for people living with EB. The EB centres of excellence have multidisciplinary teams providing expert specialist EB healthcare.

  • EB patient management

    EB patient management

    People living with EB have fragile skin. It may blister and tear very easily, including the mouth and throat. Ask the patient or my family for advice. They are the experts.

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  • What is EB?

    What is EB?

    Epidermolysis Bullosa (EB) is a painful genetic skin blistering condition with no cure. Find out about different types of EB, causes, symptoms and treatments.

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  • Who we are

    Who we are

    DEBRA is the national charity that funds research and healthcare to support individuals and families affected by Epidermolysis Bullosa (EB)

  • Our history

    Our history

    DEBRA was founded in 1978 by Phyllis Hilton whose daughter Debra had Dystrophic EB – the charity was the world’s first EB patient support group.

  • Dystrophic EB (DEB)

    Dystrophic EB (DEB)

    Can be mild or severe (dominant or recessive). The defective gene and fragility occurs below the basement membrane within the superficial dermis.

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