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.
Dystrophic nail care for people living with EB
Hyperkeratosis (callus) care for adults living with EB
Footwear advice for parents caring for a child living with EB
Footwear advice for adults living with EB
Support for parents caring for a child living with EB
Support for adults living with EB
Support from your EB team/healthcare providers
SKIN AND WOUND CARE
Guidance for adults with EB and their carers
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.