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Our strategic focus

The devastating nature of the condition drives our determination to do more than we have ever done to achieve our vision of a world where no one must suffer with EB.

This means not only accelerating research to improve quality of life, but challenging ourselves and lobbying others to leverage the significant funds that could lead to effective drug treatments for every type of EB, treatments that every EB family dreams of. It means a step-change in our fundraising and our approach to finding individuals, organisations, and government bodies to achieve what we have been working towards for over 45 years. 

 

READ OUR 2022-2026 STRATEGY

 

Read more below about our ambitious plans:

 

A clear strategy moving forward

We have developed an ambitious new strategy, with a clear vision for where we want to be in five years, focusing on four key areas:

  • Increase EB awareness
  • Research and development
  • The EB community
  • Income generation 

Over the next five years we will ensure we have a sustainable and profitable retail portfolio with stores in locations that fit our business model.

We will continue to develop our online sales and leverage fundraising and philanthropic opportunities to maximise our profit potential and thus the difference we can make for the UK EB community. 

 

A new era primed for breakthroughs

We are living in an era of enormous scientific and medical innovation. The tremendous efforts of researchers looking into treatments and vaccines during the COVID-19 pandemic demonstrated that a global and collaborative approach can lead to outstanding results.

This approach can also be effective for EB research and healthcare. Over the next five years, we will work with national and international partners to improve the delivery and quality of specialist EB healthcare services and drive a programme of world-class, innovative, and collaborative research that will bring hope and improved outcomes for everyone living with all types of EB.

Through our partnership with NHS England we will develop a national EB patient register, we will continue to nurture the next generation of EB researchers, and we will bring new investment into EB research that will enable us to continue our drug repurposing journey as we strive to secure effective drug treatments for every type of EB.

 

Our commitment to the EB Community

People living with or directly affected by all types of EB are at the heart of everything we do. Their lived experiences and views drive our commitment to connect patients, families, and carers with the vital and wide-ranging specialist services and support they need.

We will continue to empower and advocate for the EB community, ensuring their voice is heard and acted upon, building our knowledge through surveys such as the 2023 EB Insights Study and the JLA EB study to increase our engagement with our members and to help us shape the services we provide for the EB community, and the research we invest in.

We want to ensure that DEBRA UK is the ‘go to’ place for everything relating to EB. To achieve this, the key to our success is our people. We will prioritise learning and development for our staff and volunteers and increase access to specialist EB knowledge and information for all who support people living with all types of EB. 

To find out more, please read our 2023-2026 Member Services strategy.

 

Together, we can BE the difference for EB

Thank you to the EB community, the specialist EB healthcare professionals and researchers, our retail customers, trusts, corporate partners, regular givers, lottery players, donors, our trustees, staff and volunteers. It is your continued commitment and support which has brought us this far and which will enable us to achieve our ambitious goals.

Together we can BE the difference and achieve our vision of a world where no one suffers with EB.