EB research

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

We have supported a wide range of research projects both nationally and internationally. By partnering, facilitating, funding and co-funding pioneering biomedical research and evidence-based studies for advocacy, we have contributed to the growing understanding of EB and supported ongoing progress in the field.

Rare diseases like EB are often overlooked in the development of new treatments. Given its complexity and the variability of its forms, there is no one-size-fits-all solution. A cure is likely to involve a combination of targeted therapies tailored to individual needs.

If you are interested in collaborating with us, please contact us.

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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.

These priorities will guide how we fund research and make strategic decisions going forward, helping us focus on the areas that can have the greatest impact on quality of life for people living with EB.

1.

A. Wound healing & blister prevention, including genetics, gene therapy

2.

B. Feet, including shoes, prevention, Botox

3.

Pain

4.

Mental health

5.

E. Gastrointestinal, Eyes, Dental, Cancer

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