Together, we can end the fight for EB care.

Together, we can end the fight for EB care.

Right now, many people living with epidermolysis bullosa (EB)* are struggling to get the support they desperately need, and a lack of funding and a shortage of nurses are leaving some families without reliable and consistent nursing care at home.

Nursing care is essential to protect the health and wellbeing of children and adults with more severe forms of EB. These nurses manage and assess wounds at home and are vital to helping prevent dangerous infections.

No parent should be forced to provide this complex care themselves due to a lack of resources. Bandage changes involve intense physical pain, making it particularly difficult and emotionally draining for parents and loved ones.

This EB Awareness Week, we need to raise our voices and fight for better EB care.

Add your name to call on the Minister for Health to invest in EB care now.

From time to time we would like to send you updates on our work and let you know about other ways you can help families living with EB. You don’t have to leave your email address, but if you do, we’ll use it to keep you updated on how you can get involved through petitions, campaigning, and donating.

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*What is EB?

Epidermolysis bullosa (EB) is a rare genetic condition that makes your skin so fragile that even a gentle touch can cause blistering and open wounds.

Children and adults living with more severe forms of EB have to wear bandages across most of their body to protect their skin and prevent infection. These bandages and the wounds they protect need to be carefully looked after, with most people needing a full bandage change at home at least three times each week.

Bandage changes are a painful procedure during which blisters are burst and drained, ointments are applied, and the skin is wrapped in up to three layers of dressing.