In just two minutes our video sums up what makes life so hard for everyone affected by EB and how your support creates real lasting hope. Together we’re a powerful force for change. The latest version of the newsletter is the perfect accompaniment to our video because every story brings to life that vital question – What is tough?
EB is an incurable genetic condition that affects the body's largest organ; the skin.
People living with EB are missing the essential proteins that bind the skin's layers
together, so any minor friction, movement or trauma causes it to break, tear, and blister.
It is as fragile as a butterfly wing.
That's why we're here. To be a positive force for all those living with EB
and all whose lives have been impacted by EB.
We are the largest funder in Ireland of EB research. We drive research into effective treatments and cures for all types 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.
Your donation funds respite, counselling sessions for adults with EB, play therapy for children, home visits, home adaptations and specialised EB training for nurses and medical staff, research projects, amongst other things.
support calls a year
committed towards Irish projects valued at over €600,000
research projects currently ongoing In areas such as wound healing, quality of life, gene therapy and pain management
visits in one year