Skin disease charity championed by Colin Farrell welcomes HSE funding pledge

The agreement was reached earlier this week between Health Minister Stephen Donnelly and the charity Debra.

It follows the recent calls for more funding by actor Colin Farrell, who ran the Dublin marathon to raise money for its activities, and help his friend Emma Fogarty, who suffers from the condition.

Around 300 people have the condition which leads the skin to become very fragile. Any trauma or friction to the skin can cause painful blisters.

Chief executive Jimmy Fearon said he was given an official commitment by Mr Donnelly that the charity will receive annual funding at a meeting on Wednesday.

"It has been a long road but at last, we have a firm promise from the Government that this funding will be in place for those living with EB in Ireland, and their families," he said.

"This has been achieved through years of tireless advocacy and marks a key milestone in meeting the needs of those with EB and improving their quality of life.

"The emotional and physical toll on them is huge and many carers feel overwhelmed, isolated and out of their depth."

The funding matches what Debra had asked to be provided in Budget 2025 – a ring-fenced fund of of €670,000 to build integrated and sustainable nursing care to alleviate some of the heavy burden of the lifelong condition.

He said up to this point, families have argued that the current level of home care is fragmented, fragile and not properly co-ordinated.

The fresh funding will also include €30,000 for additional psychological support at St James's Hospital to safeguard the mental health of EB patients, whose quality of life is affected by constant pain, and a bandage supply scheme, he added.

"We will continue to support everyone in the EB community with their psycho social needs," Mr Fearon said.

"This funding commitment is indeed a leap forward, yet Debra still relies on public support for critical research, emotional, psychological and social care, and community resources, as well as items such as antibacterial silk socks, therapeutic cot sheets and pillowcases, or even books to help children with EB process their emotions."

The charity's 'Run to 40' fundraising campaign, which initially planned to raise €400,000, has now exceeded €857,000.