EB HEALTHCARE RESOURCES
EB is a highly complex condition requiring the involvement of a multidisciplinary 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 have created a series of EB healthcare resources that you can access for free. The development of these resources would not have been possible without the input of EB clinical experts. If you are interested in sharing your experiences to help us create more, we would be delighted to hear from you.
CLINICAL PRACTICE GUIDELINES (CPGS)
We are undertaking a long-term initiative to develop clinical practice guidelines (CPGs) for EB. They 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.
COMING SOON IN 2020
Management of Anaemia
Hand surgery and rehabilitation therapy
Oral health care (review)
DUE IN 2021
Enteral and parenteral feeding
Pregnancy, childbirth, and aftercare
DUE IN 2022
Complementary, alternative, and integrated medicine
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.
There are a number of EB patient versions already available linked to the psychosocial care, foot care, occupational therapy, and laboratory diagnosis CPGs.
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.
Our mission is to produce best practice guidelines for all the major clinical and social areas involved in the care of people with EB, corresponding patient versions, and EB infographics detailing essential information for low-resource settings.
In order to develop these healthcare resources, we need both EB and non-EB clinical experts to get involved.
View and download our fact sheet, which provides you with the key information on how these resources are developed, 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, patient versions, and/or EB infographics, please consider joining the CPG Network. Joining the Network is entirely voluntary and you can change your preferences or opt out at any time.