Our ambition and plans

The devastating nature of this condition drives our determination to do more than we have ever done to achieve our vision and end the suffering that EB brings.

This means not only accelerating research to improve quality of life, but challenging ourselves and lobbying others to leverage the significant funds that could bring forward the cure that every 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 40 years.

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, focussing on four key areas:

increase EB awareness

research and development

the EB community income generation

We are in a position, despite the challenges of the COVID-19 pandemic and the impact on our finances, to exit the crisis strongly as a growing organisation.

Over the next five years we will increase the number of our retail stores, develop our online sales and build on fundraising and philanthropic opportunities to return to and surpass pre-pandemic levels of income generation, investment and service.


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, vaccines and cures for COVID-19, has demonstrated that a global and collaborative approach can lead to outstanding results.

This approach is also the most effective for EB research and healthcare. Over the next five years, we will work with national and international partners to improve delivery of specialist 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.

We’ll extend our partnership with the NHS to develop a national EB patient register, introduce schemes to nurture the next generation of EB researchers and bring new investment into EB research with a focus on drug repurposing and to accelerate research understanding of EB, all to improve the quality of life for those living with EB.


Our commitment to the EB Community

The EB community is 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 empower and advocate for the EB community, ensuring their voice is heard and acted upon, building our knowledge through Quality of Life surveys to increase our engagement with our members and help us shape our services.

We want to ensure that DEBRA 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, volunteers and increase access to specialist EB knowledge and information for all who support people living with EB.

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


Together, we achieve more

Thank you to the EB community, the specialist healthcare professionals and researchers, our retail customers and trusts, companies and 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 will achieve our vision of a world where no one suffers with Epidermolysis Bullosa.