EWMA 2020, 18-20 Nov

EWMA 2020: Dystrophic Epidermolysis Bullosa Research Association (DEBRA)


Session title: Collaboration, Multi-disciplinary Working and Development of Clinical Guidelines to Improve the Care of Adults and Children with the Rare Skin Fragility Condition, Epidermolysis Bullosa (EB)


Introduction to epidermolysis bullosa (EB) and overview of guidelines with a focus on skin and wound care in this rare skin fragility disease. In keeping with the conference theme, we will discuss how EB teams share expertise through collaboration across professions and organisations locally, nationally and internationally. Through the development of best practices and new clinical guidelines, we are able to share best practices and improve patient care and safety globally.


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. 



Introduction to EB and Current Approaches to Improvement of Patient Care Through Local, National and International Collaboration

Annette Downe, EB Clinical Nurse Specialist, United Kingdom

Guy’s & St Thomas’ Hospital, London

New Guidelines for Adult EB Patients Undergoing Clinical and Surgical Procedures

Karen Snelson, Advanced Nurse Practitioner (EB), United Kingdom

Guy’s & St Thomas’ Hospital, London

Paediatric Outreach Work - Wound Management in the New-Born with EB 

Katie Plevey, Paediatric EB Clinical Nurse Specialist, United Kingdom

Great Ormond Street Hospital, London