- About EB
- EB support
- EB research
- Get involved
- Our campaigns
- Who we are
After years of relentless advocacy, we now have a firm commitment from the government to fund EB care in Ireland. The next step is turning this promise into action. While this may take time to implement, please know that we’ll be working closely with the government every step of the way to ensure this funding is rolled out in a timely manner and to the highest standard.
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Every euro donated will continue to fund vital research, provide critical services, and transform the lives of those living with butterfly skin.
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.
If you have recently discovered that your child has a suspected case of EB, we want you to know that we are here to offer support. Receiving a new diagnosis can be overwhelming, and it is important to take things one day at a time.
Our experienced team has helped numerous families adjust to an EB diagnosis, and we are here to assist you as well. To access support, simply register with us. We will arrange a call or a visit according to your needs.
We are here to tell everyone about EB, to compel everyone to care, and to be a positive force for all those living with EB, caring for someone with EB, or who have been bereaved by EB. We are here to help in all kinds of everyday ways, to listen, support, empower and alleviate unimaginable pressures. We are here to lobby those in the halls of power. To command attention, demand and drive research and ensure imperative progress is made. But above all, we are here to bring hope – and not that passive, powerless, resigned kind of hope – but the active, bold hope that moves things on.
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
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