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.
For every newly published CPG, we are designing complementary patient guides for use by EB patients, their families, and carers. These guides "translate" the information and recommendations from the CPGs into a language style and format that is more suitable for a lay audience.
We have also created a number of EB infographics that are chiefly to support those living with EB in low-resource settings; 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.
The patient guides and EB infographics are available in an increasingly greater number of different languages. Please consider sharing these documents with your EB patients and their carers.