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What is EB?

What is epidermolysis bullosa (EB) or "Butterfly Skin"?

EB is an incurable genetic condition that affects the body's largest organ; the skin.

People living with EB are missing the essential proteins that bind the skin's layers
together, so any minor friction, movement or trauma causes it to break, tear, and blister.

It is as fragile as a butterfly wing.

That's why we're here. To be a positive force for all those living with EB
and all whose lives have been impacted by EB.

There are 4 types of EB

If you have just received a new EB diagnosis or are looking for support, we are here for you

If you have recently discovered that your child has a suspected case of EB, we want you to know that we are here to offer support. Receiving a new diagnosis can be overwhelming, and it is important to take things one day at a time.

Our experienced team has helped numerous families adjust to an EB diagnosis, and we are here to assist you as well. To access support, simply register with us. We will arrange a call or a visit according to your needs.

Register with us

We know what it is to be tough

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.

Donate today
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How can we help you?

EB research

We are the largest funder in Ireland of EB research. We drive research into effective treatments and cures for all types EB. Rare diseases, such as EB, often get overlooked when it comes to the development of new treatments. And because of the various forms of EB and its complexity, treatments and a cure are not universal. A cure is likely to look like a combination of treatments.

 

What we do?

Make a donation

Your donation funds respite, counselling sessions for adults with EB, play therapy for children, home visits, home adaptations and specialised EB training for nurses and medical staff, research projects, amongst other things.

Our impact

500

support calls a year

€416,000

committed towards Irish projects valued at over €600,000

15

research projects currently ongoing In areas such as wound healing, quality of life, gene therapy and pain management

Over 50

visits in one year

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