EB PATIENT GUIDES

EB is a highly complex condition so to help you with the daily management of EB, we have developed a range of patient guides on different health and social care topics. They are specifically designed to be used by people who either have EB or care for someone who does. They can also be useful to share with family members, friends, teachers, and colleagues so they can understand more about the condition.

 

We have also created a number of EB infographics. These are very similar in content to the patient guides but more icon/picture based. Although they are targeted for people living in low-resource settings, the information is still relevant to anyone living with or caring for someone with EB anywhere in the world and can be used as a simple, quick-reference guide on EB care.

​

Both the patient guides and EB infographics are available in a range of different languages.

​

The information and recommendations in the patient guides and EB infographics are derived directly from clinical practice guidelines (CPGs) for EB. The CPGs provide a framework to support and improve clinical and social care decision-making by professionals as they care for people with EB.