14
research projects currently ongoing
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.
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.
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
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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.
research projects currently ongoing
projects completed
committed towards international projects
committed towards Irish projects
