EB Awareness Week is an important opportunity to draw attention to the fight that people living with EB experience every single day. It’s a fight for essential treatment, care and support. A fight for the services that would change people’s lives.

This year, we built on the open letter we sent ahead of Budget 2023 and launched a campaign calling on the Minister for Health Stephen Donnelly to invest in EB care now. So far, thousands of our incredible supporters have joined people living with EB and their families in demanding funding for nursing care. Thank you so much to everyone who took action and to Liz and Rachel, two amazing mums, and to our patient ambassador Emma for sharing their powerful stories this week – together we’re fighting for a future where everyone living with EB gets the nursing care they need at home.

Having reliable and consistent nursing care is essential to protect the health and wellbeing of children and adults with more severe forms of EB. Nurses do bandage changes and manage and assess wounds – crucial treatment that helps prevent dangerous infections.

Parents shouldn’t have to provide this kind of complex care themselves due to a lack of resources. And yet a lack of proper funding and nursing shortages mean that sometimes they do. It’s a traumatic, emotionally draining experience for both parents and children.

The Government didn’t answer our call for better funding for EB care in the Budget earlier this year. Which is why it was important to stay focused on fighting for better care this EB Awareness Week.

One week won’t change the system – but every time we raise our voices, we get one step closer to making sure that everyone living with EB in Ireland gets the treatment, care and support they need. And we’re not going to give up until every family has reliable and consistent nursing care at home.

Thank you again to everyone who supported this campaign – EB Awareness Week might be almost over for another year, but together we’ll keep fighting every single day until no one living with EB has to struggle to get the care they need.