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.