DEBRA Ireland
We might be a small charity but, make no mistake, our mission and our ambitions are colossal.
We are here to tell Ireland and the world beyond its borders about Epidermolysis Bullosa. We are here to compel everyone to care and inspire everyone to act.
We are here to be a positive force for all those living with EB and all those whose lives have been impacted by EB. 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, hungry, bold hope that moves things on. We are here to prove the power of the butterfly effect – that seemingly small acts and forces can in fact create the most meaningful and monumental change.
We are the butterfly skin charity.
Uniting for change for everyone with skin as fragile as a butterfly wing.
overview
We are dedicated to transforming the lives of people living with EB, caring for someone with EB, or bereaved by EB, through care, research and advocacy.
where your money goes
Your donation can help us pay for items such as antibacterial silk socks, therapeutic cot sheets and pillowcases, or even books to help children with EB process their emotions.
Your support also 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.
history
We’ve come a long way since we were founded in 1988. Back then, a group of determined parents came together with one goal: to improve life for everyone affected by EB. They wanted to make sure the best medical, psychological and community care was always available – just as we do today.
Jump forward to today and our work now encompasses advocacy, research and a huge range of support for patients, families and carers. Our support team criss-crosses the country, visiting patients at home and providing grants to help families cope with the many challenges of EB. All this supported by an incredible community of donors.
But while we have achieved so much together, we still have so much to do. Care for people living with EB must keep improving, with more customised support and a greater focus on EB’s emotional impact.
Research must continue to hunt for answers that can transform support and deliver treatments now.
Everyone diagnosed with EB in Ireland must get the best possible support at the right time, every time.
Unit 28B,
+353 (0) 93 52467
