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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.

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