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 (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 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.
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.
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
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.
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.