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. 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: debraireland.org/ebaw - Add your name and make sure no one living with EB has to suffer alone.