EB research - Debra Ireland

EB research

We are the largest funder in Ireland of EB research.

So far, we have invested over €1,000,000 across 15 active projects, and 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.

Research can help change this. It can help make EB treatments, and a cure, come closer to reality.


EB research encompasses all research
projects dedicated to 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 we will 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?

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 living 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

Our achievements


research projects currently ongoing

Over 10

projects completed


committed towards international projects


committed towards Irish projects

Apply for funding for your research

Submit an expression of interest for your research project

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