The DEBRA Care Conference (DCC), hosted by DEBRA America, took place from 17th to 20th July 2022 in Boulder, Colorado. DCC is one of the world’s largest gatherings of the Epidermolysis Bullosa (EB) community.

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The First World Congress on Rare Skin Diseases took place in Paris at the beginning of June 2022. The Congress was organised by the European Reference Network (ERN) for Skin and the Rare Skin Diseases Network of the Fondation René Torraine. Medical teams, scientists, patient representatives, policy makers and industry came together under one roof for three days.

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This blog post was co-authored by Mary Bailey.

Prof Liam Grover and his research team at the University of Birmingham are currently developing a spray that will be used to treat oral scarring, mouth ulcerations and internal blistering in EB.

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The annual DEBRA International Congress took place last week from Thursday 16th until Sunday 19th September 2021. The event was hosted by DEBRA Russia, and although attendees could not be in Moscow in person this year, the charity ensured that the learning experience was as engaging as possible with a stellar line-up of 40 EB experts speaking in a 3D virtual environment. 

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This blog post was co-authored by Mary Bailey, an EB family member.

Clinical trials are how scientists test new methods to diagnose, treat, cure, and prevent health conditions, including rare health conditions such as EB. Clinical trials are a lengthy process usually, as the goal is to ensure this new method is both safe and effective before use.

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