Doctor's Desk

CLINICAL PRACTICE
GUIDELINES FOR EB 

EB is a highly complex condition requiring the involvement of a interdisciplinary team to address the various health and social aspects of care.

 

To help ensure the best possible care for EB patients and their families worldwide, we are undertaking a long-term initiative to develop clinical practice guidelines (CPGs) for EB. CPGs provide best practice information and recommendations that guide health and social care professionals as they care for people with EB. The guidelines are based on evidence gained from medical science and, when no evidence exists, on professional and patient expert opinion. In a condition as complex as EB, where approaches to care differ greatly, CPGs provide a very useful framework to support and improve clinical and social care decision-making.

 

For every newly published CPG, we are designing complementary patient guides for use by EB patients, their families, and carers. These guides "translate" the information and recommendations from the CPGs into a language style and format that is more suitable for a lay audience. ​We have also created a number of EB infographics that are chiefly to support those living with EB in low-resource settings; the information is adapted for situations where medical resources are limited and is primarily displayed using icons with supplementary written explanations. Although targeted at people living in low-resource settings, the information is still relevant to anyone living with or caring for someone with EB. ​The patient guides and EB infographics are available in an increasingly greater number of different languages. Please consider sharing these documents with your EB patients and their carers.

Gold Ribbon
BEST CLINICAL PRACTICE GUIDELINES

Cancer management

Microscope

Laboratory diagnosis

CLINICAL PRACTICE GUIDELINES

Laboratory diagnosis

Holding Hands
BEST CARE PRACTICE GUIDELINES

Pain care

Group Meditation

Psychosocial care

EVIDENCE BASED GUIDELINES

Psychosocial care

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PREVENTATIVE NUTRITIONAL CARE GUIDELINE

Constipation management

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Occupational therapy

CLINICAL PRACTICE GUIDELINES

Occupational therapy

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Physiotherapy

CLINICAL PRACTICE GUIDELINES

Physiotherapy

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Skin and wound care

BEST PRACTICE GUIDELINES

Skin and wound care

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Foot care

EVIDENCE BASED GUIDELINE

Foot care

At the Dentist
CLINICAL PRACTICE GUIDELINES

Oral health care

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Pregnancy, childbirth, aftercare

CONSENSUS-BASED GUIDELINE

Pregnancy, childbirth, aftercare

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CLINICAL PRACTICE GUIDELINES

Supporting sexuality

 
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FOR YOUR EB PATIENTS

Share the patient guides and EB infographics with your EB patients, their families, and carers