Epidermolysis bullosa (EB) is an incredibly painful genetic skin blistering condition. It causes the skin to blister and tear at the slightest touch. EB can affect the hands and feet only, or in the most severe cases, any part of the body, including blistering on the eyes and internal organs.
Epidermolysis Bullosa PSP
Epidermolysis Bullosa Priority Setting Partnership
The PSP will work with EB patients, carers of those living with EB, and clinicians to identify uncertainties about care and treatments for the EB community, with care being defined as ways to manage the symptoms of EB. The PSP will focus on identifying research priorities across the four main EB sub-types - Simplex, Dystrophic, Junctional and Kindler.
The PSP is being led by DEBRA UK.
The initial survey opened in June 2024
The image is courtesy of DEBRA UK.
Key documents
These documents set out the aims, objectives and commitments of the PSP.