DEBRA is only funding 16% of this study.  The rest is being funding by donations from two pharmaceutical companies, Amryt Pharma and Krystal Biotech.  Neither of the pharmaceutical companies have any involvement in the design, execution, or analysis of the study, and are purely providing funding. The reason for doing this study is to ensure members and their needs are at the centre of everything we do in order to improve quality of life for people living with EB, which is central to our mission as a charity.