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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.

I am Taking a Leap for Debra

Created by Liz O'Donoghue

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