Skip to content

Healthcare & research partnerships

Two hands wearing white gloves, symbolizing healthcare and research partners, are shaking hands against a dark background.

Our ambition is to find effective treatments to lessen the day-to-day impact of all types of EB and ultimately to secure cures. To achieve this, we need a global and collaborative approach.

We partner and work collaboratively with world-class scientists and clinicians, national and international partners from academia, biotechnology, pharmaceutical industries, and organisations with a shared interest in EB or other skin conditions.

“We are calling on the wider scientific community, other funders and our industry partners to join us on our journey to accelerate EB research innovation.”

– Dr Sagair Hussain, Director of Research at DEBRA

Find out more

Our research

Email our research team

Our research partnerships

Action Medical Research

We have partnered with Action Medical Research for Children on a project grant. The funding will support a research project that could be transformational for thousands of children in the UK suffering with the everyday pain of living with EB.

Association of Medical Research Charities (AMRC).

We are proud members of the Association of Medical Research Charities (AMRC). All projects undergo a thorough application and review process by our Scientific Grants Advisory Panel (SGAP) guaranteeing that we only fund high-quality projects. This process ensures new research projects build on existing knowledge, which helps us to only invest in projects that give the best chance of breakthroughs leading to change.

GlobalSkin

GlobalSkin is a unique global alliance supporting patient organisations to improve the lives of dermatology patients worldwide. Their work is focused on supporting their members in the fields of research, advocacy, and support. By working with partners such as GlobalSkin to exchange ideas and best practice thinking, we stand a better chance of securing the support we need to ensure that in the future no one has to suffer with the pain of EB.

Genetic Alliance UK

Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare, and undiagnosed conditions in the UK. They work on a variety of issues that families and individuals with genetic conditions face and aim to provide information and support to families whilst influencing the services needed by these patients. Working as a member of the Alliance will help us in raising awareness and understanding of EB.

Fight for sight

We collaborated with charity Fight for Sight to set up a partnership to co-fund eye research in EB.

Medical Research Council (MRC)

The Medical Research Council (MRC) collaborates with DEBRA to offer jointly funded clinical research training fellowships, Clinician Scientist Fellowships and Career Development Awards to support the next generation of EB researchers.

DEBRA Ireland

We collaborate with DEBRA Ireland to co-fund EB research.

DEBRA France

We collaborate with DEBRA France to co-fund EB research.

DEBRA Nederland

We collaborate with DEBRA Vlinderkind to co-fund EB research.

Great Ormond Street Hospital (GOSH) Charity

We partner with GOSH Charity National Research Project Grants to offer funding for EB research involving children.

Our healthcare partnerships

DEBRA International

We are a founding member and continue to invest in DEBRA International, our umbrella organisation supporting nearly 50 groups worldwide, working collaboratively for EB. Through DEBRA International we support the development of Clinical Practice Guidelines to increase professional knowledge and best practice for patients with EB around the world.

British Association of Dermatology

We are members of the British Association of Dermatology, which is dedicated to medical education, professional practice and standards, and research in dermatology.

The Dermatology Council for England

The Dermatology Council for England has a unique position in bringing together a wide range of key dermatology stakeholders to form its opinions and can truly represent the broad needs of the dermatology community. It is a key aim of the DCE to ensure relevant government and professional bodies remain aware of the needs of the dermatology community and build them into their current and future thinking and subsequent delivery.

National Institute for Health & Care Excellence (NICE)

We have been involved in National Institute for Health & Care Excellence (NICE) scoping workshops representing the EB voice to evaluate new treatment for EB.