There is very little clinical guidance on how to care for people with EB. We therefore need a way to capture the precious knowledge of healthcare professionals who have expertise in EB and also to base care on scientific evidence, whenever it exists. We do this through the development of clinical practice guidelines. We are delighted to announce that new EB clinical guidelines, on the topics of psychosocial issues, occupational therapy and podiatry, have been initiated. 

On behalf of DEBRA International, DEBRA Ireland is leading a long-term initiative to develop clinical practice guidelines for EB, in order to facilitate improved care. As EB is such a complex condition we need guidelines for many different aspects of it. We work with leading EB healthcare professionals to support them in assembling international panels of clinical experts and patient representatives, who will work together to develop a guideline. Having decided on which aspects of care guidance is most needed in, the panel then search the scientific literature for evidence and use both the evidence and their expert opinion to draw up recommendations. It is a complex and demanding process that takes a minimum of two years to complete.

Some EB guidelines such as wound care, pain care, oral healthcare and cancer in EB have already been published. This year we made huge progress in planning for additional guidelines in varied aspects of EB clinical care. We are delighted to be able to announce the initiation of some of those new guidelines – DEBRA Norway will fund a guideline on the topic of psychosocial issues, DEBRA UK will fund one on podiatry and DEBRA of America will fund one in occupational therapy. Click here for a recent in-depth report on this project.