Skip to content

DEBRA UK hosts inaugural Global EB Taskforce at Hever Castle to shape 10‑year strategy

6th March 2026 (Last updated 19th March 2026)
A group of people in formal attire, including members of the EB Global Taskforce, stand in rows on a lawn before a historic stone building with a flag on the roof. A group of people in formal attire, including members of the EB Global Taskforce, stand in rows on a lawn before a historic stone building with a flag on the roof.
This week, DEBRA UK brought together global leaders in epidermolysis bullosa (EB) research, clinical care, and innovation for the inaugural Global EB Taskforce at Hever Castle.
 
Over two days, delegates worked collaboratively to shape a bold 10‑year plan to accelerate treatments and improve quality of life for people living with epidermolysis bullosa (EB).We were honoured to welcome Her Royal Highness The Duchess of Edinburgh, whose continued support reinforces the urgency and importance of this mission.

A landmark moment for the global EB community

From Wednesday 4 to Friday 6 March, DEBRA UK hosted the first Global EB Taskforce at the historic Hever Castle in Kent, UK. The event brought together around 30 leaders and strategic thinkers from across healthcare, academia, research, and industry. Their shared goal: to challenge assumptions, share fresh perspectives, and build a long‑term roadmap that can deliver meaningful change for people living with EB.

Epidermolysis bullosa is a rare, extremely painful genetic skin condition. EB causes skin to blister and tear at the slightest touch. With skin as fragile as a butterfly’s wings, it is often referred to as “butterfly skin”. In severe cases, EB affects internal organs and can be fatal. Globally, more than 500,000 children and adults live with EB and urgently need better treatments, better care standards, and better support.

HRH The Duchess of Edinburgh joins global experts

We were especially grateful to be joined by Her Royal Highness The Duchess of Edinburgh, Patron of DEBRA UK. HRH’s presence served as an important reminder of the human impact behind this work and the need for bold thinking to drive progress.

HRH The Duchess of Edinburgh spoke to delegates attending the event on Thursday and expressed her delight that so many leading professionals from around the world had come together to improve quality of life for people with EB, she commented:

“There is the passion and drive evident in the expertise in this room to truly make a difference. I am excited to see the impact that this EB Global Taskforce has on those directly affected by EB”.

HRH The Duchess of Edinburgh has been Royal Patron for DEBRA UK since 2011 and supports the charity to raise much needed awareness of EB. She regularly meets people living with EB at DEBRA UK organised events and has supported the charity in campaigning for clarity around the clinical trial requirements for rare diseases including EB.

A woman in a light blue blazer sits at a table, smiling and engaging in conversation with two people, as the EB Global Taskforce meets in a room with patterned curtains and stained glass windows. 

A woman in a suit addresses the EB Global Taskforce, speaking to a seated group in a wood-panelled room with large windows and an ornate ceiling, whilst another person stands in the background.

Next steps: building a global roadmap for progress

The insights shared during the two‑day gathering will inform DEBRA UK’s upcoming Global EB Strategy, due for publication in April 2026. This roadmap will outline research priorities, opportunities for innovation, and actions to strengthen EB care worldwide. It will also reflect the lived experience of people with EB, whose voices remain at the heart of everything DEBRA UK does.

A shared commitment to transform EB treatments

This week’s event demonstrated what can be achieved when experts, advocates, and industry leaders come together with a shared purpose. DEBRA UK will continue to champion research, fund science that drives real‑world impact, and push for the treatments and cure that the EB community deserves. 
 

 

Three adults from the EB Global Taskforce stand indoors, one holding a Jo Downs gift box. All are dressed in business or smart-casual attire and smiling at the camera, with ornate carved wood visible in the background.

 
 

Thank you

A huge thank you to all who contributed their expertise, imagination, and determination. Together, we are charting a path toward a future where people living with EB can expect better treatments, better care, and better lives.

A special thank you to Richard Guthrie and the Hever Castle team for sponsoring and hosting this vital event.

How you can support us

To learn more about how DEBRA UK supports people living with EB - and how you can help drive the development of new treatments - please visit our Research pages or consider making a donation to support this vital work.
Our Research
Logo of DEBRA UK. The logo features blue butterfly icons and the organization's name. Underneath, the tagline reads "The Butterfly Skin Charity.
Powered by  GDPR Cookie Compliance
Privacy Overview

This website uses cookies so that we can provide you with the best user experience possible. Cookie information is stored in your browser and performs functions such as recognising you when you return to our website and helping our team to understand which sections of the website you find most interesting and useful.