Epidermolysis Bullosa

Working to to identify uncertainties about care and treatments for the EB community

The image is courtesy of DEBRA UK.

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 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.

Further information

Epidermolysis Bullosa PSP website

Find out more by visiting the Epidermolysis Bullosa PSP website

Key documents

These documents set out the aims, objectives and commitments of the PSP.

Epidermolysis Bullosa PSP protocol