EB HEALTHCARE RESOURCES

EB is a highly complex condition requiring the involvement of a multidisciplinary 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 have created a series of EB healthcare resources that you can access for free. The development of these resources would not have been possible without the input of EB clinical experts. If you are interested in sharing your experiences to help us create more, we would be delighted to hear from you.

CLINICAL PRACTICE GUIDELINES

Guidelines on the latest best practices for EB clinical and social care

PATIENT VERSIONS

Booklets on EB care designed specifically for patients and their carers

EB INFOGRAPHICS

Icon-based EB information and care booklets for low-resource settings

GET INVOLVED

Your expertise can help us create more EB healthcare resources

CLINICAL PRACTICE GUIDELINES (CPGS)

We are undertaking a long-term initiative to develop clinical practice guidelines (CPGs) for EB. They 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.

 

Below, you can find all the CPGs we have published as well as information on the ones we are currently developing.

 
Cancer management.PNG
Foot care.PNG
Laboratory diagnosis.PNG

CANCER MANAGEMENT

FOOT CARE

LABORATORY DIAGNOSIS

 
Occupational therapy.PNG
Oral health care.PNG
Pain care.PNG

OCCUPATIONAL THERAPY

ORAL HEALTH CARE

PAIN CARE

 
Psychosocial.PNG
Skin and wound care II.png
Cuidado de la piel y de las heridas II.p

PSYCHOSOCIAL CARE

SKIN AND WOUND CARE

CUIDADO DE LA PIEL Y DE LAS HERIDAS

 
Constipation management for children and
Psychosocial - EB team.PNG
Blank.png

CONSTIPATION MANAGEMENT

PSYCHOSOCIAL

GUIDANCE

.

 

COMING SOON IN 2020

Management of Anaemia​


Hand surgery and rehabilitation therapy

Physical therapy

Sexuality

Oral health care (review)

DUE IN 2021

Neonatal care

Enteral and parenteral feeding

Palliative care

Pregnancy, childbirth, and aftercare

DUE IN 2022

Transition

Complementary, alternative, and integrated medicine

PATIENT VERSIONS

For every newly published CPG, we are designing complementary patient version booklets for use by EB patients and carers. These booklets "translate" the information and recommendations from the CPGs into a language style and format that is more suitable for a lay audience.

 

There are a number of EB patient versions already available linked to the psychosocial care, foot care, occupational therapy, and laboratory diagnosis CPGs.

Please consider sharing these documents with your EB patients and their carers.

 

EB INFOGRAPHICS

The EB infographics have been developed chiefly to support those living with EB in low-resource settings. Like the patient versions, the information contained within them is derived from the published CPGs. Unlike the patient versions, 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.

 

GET INVOLVED

Our mission is to produce best practice guidelines for all the major clinical and social areas involved in the care of people with EB, corresponding patient versions, and EB infographics detailing essential information for low-resource settings.

 

In order to develop these healthcare resources, we need both EB and non-EB clinical experts to get involved.

Fact sheet

View and download our fact sheet, which provides you with the key information on how these resources are developed, what would be required of you, and the benefits of getting involved.

Join the CPG Network

If you are interested in helping us to develop current and future CPGs, patient versions, and/or EB infographics, please consider joining the CPG Network. Joining the Network is entirely voluntary and you can change your preferences or opt out at any time.

 

Learn more about our grants available to you to continue your professional development in EB care

Access and download our free EB care resources to ensure you get the latest in best practice EB care

Learn about the general basics of research, EB clinical trials, and projects funded by DEBRA groups

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