Lace up, take part and help transform lives, one mountain at a time.
For the first time ever, we’re inviting supporters to join the Alpine Butterfly Trek, a seven-day adventure through the Italian Alps, created just for Debra with Adventure.ie.
Inspired by the butterfly, our symbol of hope and resilience, you’ll walk through wildflower meadows and glacial valleys at the height of butterfly season, all while raising vital funds for people living with EB.
Only a few places left.
That’s how long Emma spent in hospital this year, until Debra advocated for her. Thanks to you, we were able to be there for her. Help us be there for everyone who needs us.
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For someone with EB, even a seam can cause painful blisters. That's why people living with EB often wear their clothes inside out, just to get through the day. This Inside Out Day, do it on purpose, and fundraise while you do it, in schools, corporates, offices, or on your own. Setting up your page takes two minutes, no target or plan needed.
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Win 2 tickets to the sold-out game between Ireland and South Africa in the Autumn International series in the Aviva Stadium. Support people impacted by EB and be in with a chance to experience one of the biggest rugby clashes of the year: Ireland vs South Africa at home in Dublin next November.
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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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