DEBRA UK

Investing in a future free of EB

We have come a long way since we were founded in the UK in 1978 as the first DEBRA support group. There are now over 50 other DEBRA groups worldwide and we now support over 3000 individuals in the UK with EB. We make a difference today with the aim of a better future for the EB Community.

Our vision...
We have a vision of a world where no one suffers from EB.

Our mission...
We provide lifelong care and support to everyone in the UK affected by EB until a cure is found.

We fund...
We fund pioneering research, specialist healthcare, international collaboration and best practice and offer lifelong community support to those affected by EB.

Together we will #FightEB

Specialist Healthcare
We deliver an enhanced EB healthcare service in partnership with the NHS through EB clinical and multi-disciplinary teams and providing training and funding for medical professionals including:

  • Funding up to 25% of each specialist EB nurse
  • £250,000 towards the Rare Diseases Centre at St Thomas’ Hospital
  • £105,000 EB podiatry project, funding training to improve medical professionals understanidng of treating patients with EB
International Collaboration
International Collaboration and coordination is vital for developing effective treatments and potential cures for EB. It allows us to coordinate research grants, fund international training and share expertise and best practice.

  • 19 global EB research sites funded by the UK in the last five years
  • 2 International clinical best practice guidelines, funded by the UK
  • Funded EB2020 in partnership with Cure EB. bringing together the world’s leading experts in EB research and knowledge
Community Support
We aim to connect people living with EB and their families with the services they need. We offer information, financial help, emotional support, respite breaks, events and more to the EB Community.

  • Over 3000 DEBRA UK Members who can receive DEBRA Membership benefits
  • 300 support emergency funding and essential grants given last year
  • 762 respite days taken in DEBRA’s six holiday homes last year
Pioneering Research
We strive to find effective treatments and cures for the EB Community to improve their quality of life. From discovering the first EB genes to funding the first clinical trial in gene therapy, we have made significant progress in advancing diagnosis, treatment and daily management of EB.

  • £7.1m spent on research grants over the last decade
  • £958,000 committed to new research projects
  • 14 ongoing projects funded by DEBRA UK in 2018-19


DEBRA makes a difference...
““When I was sixteen, I started developing severe blistering in my throat. Swallowing food can feel like eating razor blades. Because my EB is invisible, it is difficult to explain the extreme pain I am in. DEBRA UK has been my rock. Not only do they help fund EB nurses who make my condition manageable, they have made me realise I am not alone. DEBRA UK organises events where I can meet and share experiences with other people living with EB. The EB Community is a family. DEBRA UK is like the glue that keeps us together”.
DEBRA UK Member
 
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