- About EB
- EB support
- EB research
- Get involved
- Our campaigns
- Who we are
We’ve come a long way since we were founded in 1988. Every year, we move nearer to closing the gap between what families living with epidermolysis bullosa (EB) need and what they receive.
Everyone diagnosed with EB in Ireland must get the best possible support at the right time, every time, with a clear care pathway. Anything less is a failure. And we won’t stop until this happens. All our projects, all our efforts combined will bring significant change. Just like the butterfly effect. That’s what we are all about.
;)
In 2023/24, we continued its unwavering support for individuals and families affected by EB, ensuring they have access to vital resources. 100% of service users reported having access to family support when needed, with 86% rating the service as exceptional or very good.
Community-building events, such as the Barretstown family weekend and the Christmas party in Dublin, offered families a chance to come together, connect, and create lasting memories. These gatherings received overwhelmingly positive feedback and further demonstrated our commitment to placing people impacted by EB at the heart of our work.
We strengthened our advocacy efforts, successfully pushing for discussions of EB in the Dáil and raising the profile of EB in political spheres, and engagement with key decision-makers ensured that the voices of those affected by EB were heard, and we will continue to press for more government investment in EB care and support.
Research remained a cornerstone of our efforts, with key studies co-funded alongside DEBRA UK. Notable projects at Queen Mary University in London focused on treatments and molecular mechanisms of EB. Our seed funding scheme also continued to bear fruit, with several small projects securing larger national grants, helping to advance EB research. We’ve listened to the experiences of those impacted by EB. With their guidance we have tailored our services, focused our research priorities and demanded better support for people with EB.
