We are dedicated to transforming the lives of people affected by epidermolysis bullosa (EB), through care, research and advocacy.

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The Government has been urged to ensure that a breakthrough treatment for people living with the extremely painful skin disease, Epidermolysis bullosa (EB), is supplied to everyone who needs it, once it becomes available in Ireland

EB, also known as Butterfly Skin, is a rare, genetic condition which causes the skin to blister at the slightest… Read More → FIND OUT MORE
Family Support ServiceFamily Support Service

Family Support Service

With combined experience of 23 years working with families with all types of EB, we have an understanding like no other. We listen with compassion and link families in with local community support when needed.

We travel across Ireland to ensure no family with EB is left alone.

Parents, families and adults living with any form of EB can also access a range of financial and one-to-one support tailored to their needs. We also know EB not only affects those diagnosed with the condition, so we offer our counselling fund to all members of the family.

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What is EB?What is EB?

What is EB?

Imagine if your skin was as fragile as a butterfly wing. If it tore apart at the slightest touch or tiniest movement. If your days were full of stinging wounds and blisters.

This is the painful and distressing reality of people living with EB - a rare genetic skin disorder which affects the body’s largest organ: the skin.

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