EB CARE

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 guidelines on EB care to share with your healthcare providers

PATIENT VERSIONS

Booklets on EB care designed specifically for patients and carers

EB INFOGRAPHICS

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

GET INVOLVED

Help us create more care resources and review the ones already available

 

CLINICAL PRACTICE GUIDELINES (CPGS)

Clinical practice guidelines, or CPGs for short, are guidelines that provide recommendations for medical and social care. They are based on evidence gained from international research evidence coupled with opinions from professional experts and people living with EB.


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


Sharing these 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

For each newly published CPG, we are developing patient versions. These are designed specifically with you in mind. They take the information and recommendations from the CPGs and put them into a format that is easily understood by everyone.

Get involved

Our mission is to produce guidelines for all the major clinical areas involved in the care of people with EB and to do that we need you. Whether you have EB yourself, or are a parent or carer, your experiences and expertise in EB are essential to help us develop them and decide which topics to prioritise.

 
Cancer management.PNG
Foot care.PNG
Laboratory diagnosis.PNG
Occupational therapy.PNG
Oral health care.PNG
Pain care.PNG
Psychosocial.PNG
Skin and wound care II.png
Cuidado de la piel y de las heridas II.p
 

COMING SOON IN 2020

Management of Anaemia​


Hand surgery and rehabilitation therapy

Physical therapy

Sexuality

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

Patient versions are specifically designed to be used by patients, 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.


Going forwards, 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.

EB infographics

To complement the patient versions, we are also providing EB infographics. These are mainly picture rather than text based. Although they are targeted at people in low resource areas, the information is relevant to anyone living with or caring for someone with EB.

Get involved

Our mission is to produce patient versions to accompany all newly-published CPGs. To make them as relevant to you as possible, we are always looking for people to provide quotes and photographs to be included in each one.

 
Laboratory diagnosis.PNG
Occupational therapy - Children.PNG
Occupational therapy - Adults.PNG
Podiatry - Dystrophic nail care.PNG
Podiatry - Hyperkeratosis.PNG
Podiatry - Footwear - Children.PNG
Podiatry - Footwear - Adults.PNG
Psychosocial - Healthcare providers.PNG
Psychosocial - Adults.PNG
Psychosocial - Parents and children.PNG
 
 
 

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

 
 

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.