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.

Read More

The Budget was announced on 27th September, and we were listening closely to see if the Government answered our call to invest €941,000 in home care, outreach care and mental health supports for children and adults with EB.

While there were some short-term measures to tackle the cost of living crisis that we welcome, particularly supports for carers and people on disability payments, there was sadly no mention of funding for EB.

It’s disappointing, but it doesn’t mean our voices have been ignored. Both Sinn Féin and the Social Democrats included investment in EB in their alternative budgets, which shows the progress we’ve made in drawing political attention to the issue.

Earlier this month, we sent our open letter to the Minister for Health Stephen Donnelly, signed by over 2,800 of our wonderful supporters. A huge thank you to everyone who added their name, and to our incredible advocates Emma Fogarty and Liz Collins for leading our #InvestinEB campaign.

Together, we’ve shined a spotlight on the desperate struggle many people living with epidermolysis bullosa (EB) face to get care and support – and called loudly and clearly for investment to improve it. In the coming months, we will continue to meet with decision-makers, keep people with EB at the centre of our discussions and push for the investment we know is so badly needed.

Later this October, we’ll celebrate EB Awareness Week, where our focus will remain on our fight for better care for people living with EB across Ireland. Together, we’ll continue to push the Government to provide reliable home nursing care for families living with EB.

Thank you again to everyone who supported this campaign. It’s only by coming together that we can push EB up the financial agenda and make sure everyone living with it, day-in and day-out, gets the treatment, care and support they need.

Read More