EB research - Debra Ireland

EB research

We are dedicated to supporting EB research projects, helping to bring potential treatments closer to a reality.

We have invested over €1,000,000 across many research projects both nationally and internationally. We have been responsible, through funding pioneering research and working internationally, for establishing much of what is now known about EB.

Rare diseases, such as EB, often get overlooked when it comes to the development of new treatments. And because of the various forms of EB and its complexity, treatments and a cure are not universal. A cure is likely to look like a combination of treatments.

It is our role to continue to highlight the importance of EB research through advocacy, networking and connecting Irish EB researchers with the international EB research community. We will also make sure the voice of those impacted by EB is heard in everything we do through our EB Expert Panel.


EB research encompasses all research
projects that grow the knowledge-base towards finding
treatments and cures for all types of EB.

Over the years, we have funded many research initiatives. And even though many technologies around the world are now in clinical trial phase, we will continue to invest in research that contributes to solutions to improve quality of life of people living with EB.


How will we know we have made a difference?


  • The national voice of people living with EB is at the heart of our research.
  • People impacted by EB are informed and hopeful.
  • Potential treatments and cures are generated for the challenges associated with living with EB.
  • Evidence will be generated for advocacy campaigns.
  • Irish researchers are aware of EB.
  • New generations of healthcare professionals and scientists are aware of EB.


How do we achieve this?

We support the scientists that undertake EB research

We fund EB research

We identify new EB research funding opportunities

We advocate and lobby for improved research funding and opportunities in Ireland

We support an EB patient registry

We work on behalf of DEBRA International to communicate developments in research, to people in Ireland and around the world

We ensure that those who link with us have their voice heard in all projects which we fund or support through the EB Expert Panel

Our research priorities and focus

Due to the complexity of EB, a cure is likely to look like a combination of treatments from the below research areas.


Wound healing


Pain management


Gene and cell therapy


Medical devices


Psychosocial/mental health studies


Better access to treatments and trials

With no awareness there is no funding. With no funding there is no research. With no research there is no cure. And without a cure, there is no hope. And we are here to bring hope and improve the quality of life of people living with EB.

Jimmy Fearon - CEO

Join our EB Expert Panel (PPI)

Public and Patient Involvement (PPI) in research is research carried out “with” or “by” those impacted by a condition such as EB, rather than “to”, “about” or “for” them.

The EB Expert Panel are individuals with EB, caring for someone with EB, or bereaved by EB, who advise us on our research and delivery of our services. Participation is voluntary and the Panel meets 2 or 3 times a year as a group.

Learn more

For Debra-funded researchers -

Apply for funding for your research

Get started

For researchers new to Debra

Submit an Expression of Interest for your research project

Get started

Organisations we work with to support EB research

Health Research Charities Ireland

Health Research Board

Irish Research Council

DEBRA International


DEBRA Austria

EB Research Network

CHI Crumlin

St James’s Hospital

National Rare Diseases Office (NRDO)