Clinical Practice Guidelines

Doctor checking someones pulse Medical professional using a stethoscope.

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

Constipation management*

Foot care*

Hand surgery & hand therapy*

Laboratory diagnosis

Occupational therapy

Oral health care*

Pain care

Physiotherapy

Pregnancy, childbirth & aftercare

Psychosocial care

Skin & wound care

Supporting sexuality

Palliative care clinical practice guidelines

Palliative and end-of-life care

Screenshot of neonatal care practice guide

Neonatal care

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Emergency information for EB patients

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.
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.
Events for professionals

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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