Who we are - Debra Ireland

We are Debra

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 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.

Uniting for change for everyone with skin as fragile as a butterfly wing.


Our vision, mission and values



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.



We are driven by togetherness, boldness, integrity, passion and being person-centred.



A world where no-one suffers from EB.

Governance and management

Debra is both a registered charity (RCN 20021726, CHY No. 8703) and a registered company (No. 141279).We keep everyone impacted by EB at the heart and core of what we do to the highest possible standards for governance, integrity, and accountability.We are compliant with the Charities Governance Code.

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Annual reviews and financial statements

Learn about our work activities throughout the last year. Our accounts are prepared annually in accordance with the Charities SORP, are independently audited and are available to the public.

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We are a triple locked charity

We are a Triple Lock member of Charities Institute Ireland which actively demonstrates our openness, transparency and integrity to our beneficiaries and donors.

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Our strategy for 2022–2025

We want to achieve the greatest possible impact for everyone living with EB. Our strategy 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.It was created with extensive input from people living with EB, their families, carers, medical professionals, researchers and donors.

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Our Senior Management Team

  • Jimmy Fearon

    Chief Executive Officer

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  • Sinéad Hickey

    Head of Research

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  • Alejandra Livschitz

    Head of Communications

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  • Deirdre Callis

    Head of Family Support Service

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  • Joanna Joyce

    Head of Advocacy and Policy

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  • Pauline Williamson

    Head of Finance

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  • Sinéad Christian

    Head of Fundraising

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Our celebrities

Meet our celebrity supporters

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Work for us

Find our about the latest job opportunities

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