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Our strategy

Our strategy

EB is a global challenge and over the next 5 years, our strategy is to continue to balance our £2m annual investment between developing treatments for EB and UK focused care.

Our Research Strategy

These are based on the EB community’s increased emphasis on quality of life and symptom relief research:

  • Patient trials that try to create quality of life improvements through disease modification or symptom relief 
  • Clinical best practice understanding that improves the quality of care
  • Basic research that represents innovation that is unlikely to be funded from other sources

Our Care Strategy

To help improve the quality of life of people living with any form of EB in the UK:

  • To work in partnership with the NHS to enhance the healthcare system and clinical experience for the EB community
  • To integrate as well as enhancing the State welfare and community support experience for the EB community
  • To identify priorities and unmet needs of the EB community
  • To raise awareness of EB and associated needs with local/national healthcare commissioners as well as providers/local teams, welfare services, education, workplace, and in the social arena
  • To develop and share evidence based best practice in EB
  • To encourage the brightest clinical and non-clinical staff to specialise in enhancing EB care and support

The principles that govern our Research and Care Strategy

  • To ensure that people living with EB are at the centre of our work
  • All research is world class and peer reviewed
  • To create an environment in the UK that facilitates rapid translation of ideas to patient benefit
  • As a charity, provide strategic leadership and facilitate collaboration when needed with the NHS, EB community members, DEBRA International, worldwide researchers, clinicians and other stakeholders
  • To ensure that every penny DEBRA spends on research and care has a maximum benefit for people living with EB today, and for future generations by regularly reviewing completed projects and measuring our community support
  • To source all methods of funding available
  • To be a flexible organisation to a rapidly changing scientific and provision of care situation
  • To ensure we are accountable and compliant with all regulations and work within identified best practices
Mason's story

Mason's story

As Mason smiles at you from his photo the only hint that something is wrong are the sores on his face and bandages on his arms and body...

Read his story