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.
We want to achieve the greatest possible impact for everyone living with EB. It outlines seven closely connected objectives, and we’ll regularly review and adapt it to make sure we’re making the biggest difference to people’s lives. Our strategy was created with extensive input from people living with EB, their families, carers, medical professionals, researchers and donors.