- About EB
- EB support
- EB research
- Get involved
- Our campaigns
- Who we are
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.
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.
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
Due to the complexity of EB, a cure is likely to look like a combination of treatments from the below research areas.
Jimmy Fearon - CEO
;)
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.
Apply for funding for your research
Submit an Expression of Interest for your research project
Health Research Charities Ireland
Health Research Board
Irish Research Council
DEBRA International
DEBRA UK
DEBRA Austria
EB Research Network
CHI Crumlin
St James’s Hospital
National Rare Diseases Office (NRDO)
NISR
