2022 EB Awareness Week - Debra Ireland

Our 2022 EB Awareness Week campaign

Fighting for better EB care: a focus on nursing care

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.

What some parents told us

In 2022, we raised awareness on the importance of home nursing care and the role of carers. 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.

As a result of the campaign, over 1,000 people asked the Minister for Health to invest and prioritise EB care. This was also a key focus of our Pre-Budget Submission Campaign in 2023.