What we do - Debra Ireland

What we do

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.

Our manifesto

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.

Our key working areas


EB Research

We are the largest funder in Ireland of EB research. We have been responsible, through funding pioneering research and working internationally, for establishing much of what is now known about EB. We won't stop until treatments and cures are found.


Campaigns and advocacy

No one impacted by EB should struggle to get the support and services they need. We campaign to change policies that affect people’s lives so no one has to fight alone.


EB support

Our services and support are free, confidential, and tailored to the needs of people impacted by EB. We advocate for services, provide financial support, meet face-to-face for emotional and practical support in all of Ireland, and more.

Our strategy for 2022-2025

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.

Read our strategy download