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Dystrophic Epidermolysis Bullosa Research Association (DEBRA)

Session title: Overview of Epidermolysis Bullosa (EB): Managing Common and Complex Challenges in a Rare Condition


Epidermolysis Bullosa (EB) is a rare genetic skin fragility condition which causes blistering and chronic life-long wounds. This session will introduce what EB is, the different types and the complexities of EB. There will be an overview of the principles of wound management as outlined in the best-practice guidelines 2017. The common and complex challenges in wound management will be highlighted. 

Squamous cell carcinoma (SCC) is the leading cause of death in adults with severe EB. This session will provide an overview of the presentation and management of SCC in accordance with the current international consensus document. This session will also touch on current research and developments in treatment.

The last presentation will briefly cover the specifics of this subtype of EB and the effect of challenging wounds in conjunction with a palliative care plan. Nursing interventions will be discussed and how this impacts the quality of life for the child and family.


Debra International is a worldwide network of more than 50 national groups working on behalf of those affected by epidermolysis bullosa, including individuals, families, carers and healthcare professionals.

Our mission is to ensure that people living with EB have access to the best support and medical care possible and to drive the development of effective treatments and cures for EB. To find out how Debra can help you, please visit www.debra-international.org.

Debra UK works in partnership with the UK’s National Health Service to deliver a comprehensive healthcare solution to people living with EB. 

Wednesday, 5 June 


Room: G1

Chairs: Samantha Holloway, Katie Plevey


Management and treatment of Squamous Cell Carcinoma (SCC) in EB

Annette Downe

Epidermolysis Bullosa (EB) Clinical Nurse Specialist based at Guy’s and St Thomas’ Hospital in London, one of two specialist adult centres for EB in the UK.  

EB a rare condition with common wound care challenges

Karen Snelson

Epidermolysis Bullosa (EB) Clinical Nurse Specialist based at Guy’s & St Thomas’ hospital in London, UK.

Tackling Challenging Wounds in Junctional EB Generalised Severe

Katie Plevey

Lead Clinical Nurse Specialist for Paediatric Epidermolysis Bullosa, London, UK.