GUIDELINES FOR EB
EB is a highly complex condition requiring the involvement of a interdisciplinary team to address the various health and social aspects of care. To help ensure the best possible care for EB patients and their families worldwide, we are undertaking a long-term initiative to develop clinical practice guidelines (CPGs) for EB.
CPGs provide best practice information and recommendations that guide health and social care professionals as they care for people with EB. The guidelines are based on evidence gained from medical science and, when no evidence exists, on professional and patient expert opinion. In a condition as complex as EB, where approaches to care differ greatly, CPGs provide a very useful framework to support and improve clinical and social care decision-making. Below, you can find all the CPGs we have published as well as information on the ones we are currently developing.
For every newly published CPG, we are designing complementary patient version booklets for use by EB patients and carers. These booklets "translate" the information and recommendations from the CPGs into a language style and format that is more suitable for a lay audience. Please consider sharing these documents with your EB patients and their carers.
The EB infographics have been developed chiefly to support those living with EB in low-resource settings. Like the patient versions, the information contained within them is derived from the published CPGs. Unlike the patient versions, the information is adapted for situations where medical resources are limited and is primarily displayed using icons with supplementary written explanations. Although targeted at people living in low-resource settings, the information is still relevant to anyone living with or caring for someone with EB. Please consider sharing these documents with your EB patients and their carers.
Supporting sexuality for people living with epidermolysis bullosa: clinical practice guidelines
Published 2021 | Funded by DEBRA Norway
Topics covered in this CPG include:
current understanding of EB and sexuality
preliminary recommendations for assessment and intervention strategies
future research priorities within this domain