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EB HEALTH CARE INFOGRAPHICS

EB is a very complex condition with many different aspects of health and social care to consider. To help you with your daily management of EB, we have developed a range of EB care guides, or “patient versions” as they are formally known, that you can view here and download for free.

 

Patient versions "translate" the information and recommendations from best clinical practice guidelines (CPGs), created for health professionals, into a format that is more easily understood by everyone. We are creating EB care guides/patient versions for each new CPG we publish.

 

Below, you can find all the EB care guides we have created as well as information on the ones we are currently developing. Our EB guides are specifically designed to be used by people who have EB and by those who care for them. They can also be useful to share with family members, friends, and colleagues so they can understand more about the condition.

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 for adults living with EB

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 advice for adults living with EB

PSYCHOSOCIAL

Support for parents caring for a child living with EB

PSYCHOSOCIAL

Support for adults living with EB

PSYCHOSOCIAL

Support from your EB team/healthcare providers

SKIN AND WOUND CARE

Guidance for adults 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.

 
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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

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

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