Why do we need research in Epidermolysis Bullosa?
Research is the key to better treatments. It will make step-change improvements to quality of life for people living with EB.
Prior to 1980, there was minimal research, and even less knowledge of EB in the medical community: people born with this rare genetic disorder were unable to access effective care advice. Patient organisations like DEBRA started funding fundamental EB research in the 1980s, building knowledge of EB. Much progress has been made, and technologies in development include topical and systemic drug and protein therapies through to stem-cell and gene therapies, for all EB types.
As yet, there are still no cures for EB.