EB CARE RESOURCES

EB is a very complex condition with many different aspects of health and social care to consider. We have developed a range of EB care resources that you can view and download for free. These have been developed by you for you. If you are interested in sharing your experiences to help us create more, we would love to hear from you.

CLINICAL PRACTICE GUIDELINES

Medical guides on EB care for you to share with your healthcare providers

PATIENT VERSIONS

Booklets on EB care that are designed for you and those who look after you

EB INFOGRAPHICS

Picture-based EB care and information booklets for low resource areas

GET INVOLVED

Your experience of EB can help us make more care resources

CLINICAL PRACTICE GUIDELINES (CPGS)

Clinical practice guidelines, or CPGs for short, are guidelines that provide treatment recommendations for healthcare professionals on different aspects of medical and social care. They are based on evidence gained from international research evidence coupled with opinions from professional experts and people living with the condition in question.

There are a number of EB CPGs already published that cover a range of topics including psychosocial care, pain management, skin and wound care, and cancer management, and we are currently working on 11 more.


Sharing the CPGs with the healthcare professionals who look after you is a valuable way of ensuring your care is based on the latest best practice for EB.

 

PATIENT VERSIONS

Patient versions are specifically designed to be used by people living with EB, their carers, and the general public. They "translate" the information and recommendations from clinical practice guidelines (CPGs), originally created for healthcare professionals, into a format that is more easily understood by everyone.


We are creating patient versions for each new CPG published. Below, you can find all the patient versions we have created as well as information on the ones we are currently developing.

 
Laboratory diagnosis.PNG
Occupational therapy - Children.PNG
Occupational therapy - Adults.PNG

LABORATORY DIAGNOSIS

Information for people living with EB, their families, and caregivers

OCCUPATIONAL THERAPY

Improving participation in daily activities for children living with EB

OCCUPATIONAL THERAPY

Improving participation in daily activities in adults living with EB

 
Podiatry - Dystrophic nail care.PNG
Podiatry - Hyperkeratosis.PNG
Podiatry - Footwear - Children.PNG

PODIATRY

Dystrophic nail care for people living with EB

PODIATRY

Hyperkeratosis (callus) care for adults living with EB

PODIATRY

Footwear advice for parents caring for a child living with EB

 
Podiatry - Footwear - Adults.PNG
Psychosocial - Healthcare providers.PNG
Psychosocial - Adults.PNG

PODIATRY

Footwear advice for adults living with EB

PSYCHOSOCIAL

Support from your EB team/healthcare providers

PSYCHOSOCIAL

Support for adults living with EB

 
Psychosocial - Parents and children.PNG
Skin and wound care - Adults and carers.
Blank.png

PSYCHOSOCIAL

Support for parents caring for a child living with EB

SKIN AND WOUND CARE

Guidance for adults living with EB and their carers

.

.

 

EB INFOGRAPHICS

The EB infographics are very similar in content to the patient versions but whereas the patient versions are text based, the infographics are more picture based. Although they are targeted at people living in low resource areas, the information is still relevant to anyone living with or caring for someone with EB.

Below, you can find the EB infographics we have created as well as information on the ones we are currently developing.

 
Healthy body and skin II.png
Cuerpo y piel sanos II.png
Corpo e pele saudavel II.png
 

COMING SOON IN 2020

What is EB?

Healthy mind and control

DUE IN 2021

Balanced life and social life

Healthy eating and nutrition

DUE IN 2022

Care of a newborn

Pregnancy and birth

Stay active and mobile

GET INVOLVED

To help ensure that everyone living with EB worldwide receives the best care possible, our mission is to create guidelines on the best clinical care practices for EB, patient versions for each guideline produced, and EB infographics that provide essential information for those living in low-resource settings.

In order to develop these EB care resources, we need you to get involved. Whether you’re someone who has EB, or are a parent or carer, your experiences are essential in helping to guide their development.


Fact sheet

View and download our fact sheet, which provides you with the key information on how our EB care resources are developed, who’s involved, 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 and patient versions, please consider joining the CPG Network. Joining the Network is entirely voluntary and you can change your preferences or opt out at any time.

 

Find out about the DEBRA groups that exist in your country as well as contact details for clinical experts

If there is no DEBRA or EB support group in your country, find out how EB Without Borders can help

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

DEBRA International is a Charity registered in Austria (ZVR 932762489)

© 2020 DEBRA International. All rights reserved.