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.
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.
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.
Rare Disease Day takes place on the last day of February each year. Epidermolysis bullosa (EB) is one of over 6000 rare diseases worldwide. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare disease and their impact on peoples' lives.
Every year, we prepare a pre-budget submission that recommends changes and improvements in the administration of public and social services and related policies to EB care.