On Tuesday 19th March, our Royal Patron, HRH The Duchess of Edinburgh GCVO hosted a meeting bringing together representatives from DEBRA UK and NHS England to explore the needs, challenges and opportunities for collaboration to develop effective treatments through drug repurposing, enhanced research and clinical services for the EB community.

Representatives from DEBRA UK included Jim Irvine Chair of Trustees, Tony Byrne CEO, Prof. Chris Griffiths OBE – Independent Advisor to DEBRA UK, Dr Sagair Hussain, Director of Research and Claire Mather, Director of Member Services who were joined by the CEO of NHS England, Amanda Pritchard, and members of her senior commissioning team John Stewart, National Director for Specialised Commissioning, Prof. James Palmer National Medical Director for Specialised Services and Ellen Graham, Chief of Staff at NHS England. 

The meeting was an opportunity to clarify with NHS senior representatives the importance of effective drug treatments for EB and to understand the opportunities around repurposing drugs for the EB community. The team from DEBRA UK shared feedback received through the DEBRA EB insights study including the challenges that the EB community face due to the geographic imbalance of EB healthcare, insufficient mental healthcare, and podiatry provision for people with EB, and the need for beneficial drug treatments.

Tony Byrne, DEBRA UK CEO said:

We are very grateful to have the support of our Royal Patron, The Duchess of Edinburgh, in championing the needs of the EB community, and we hope that the output of this important meeting will see a commitment from the NHS to support drug repurposing for all types of EB, increased research capacity and continued development of the clinical services across the UK.