EB Awareness Week - Debra Ireland

EB Awareness Week

EB Awareness Week may be once a year. But for those impacted by EB, every day is a fight.

Celebrated every year between October 25-31, EB Awareness Week is an opportunity to raise public awareness and understanding of epidermolysis bullosa, promote the need for a cure, and to spur advocacy on behalf of those impacted by EB. Awareness is the first step towards securing much-needed funding for EB treatments and we won’t stop until treatments and cures are found.

Our 2022 EB Awareness Week campaign

Fighting for better EB care: a focus on nursing care

Many people living with EB are still struggling to get the support they desperately need, and a lack of funding and a shortage of nurses are still 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.

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.

What some parents told us

 

As a result of the campaign, over 1,000 people asked the Minister for Health to invest and prioritise EB care. This will remain a key focus of our Pre-Budget Submission Campaign in 2024.

 

Our campaigns

close-icon