Exciting news for EB care: Better support on the way

We’re thrilled to share some important news! After years of relentless advocacy, we now have a firm commitment from the government to fund EB care in Ireland. The next step is turning this promise into action. While this may take time to implement, please know that we’ll be working closely with the government every step of the way to ensure this funding is rolled out in a timely manner and to the highest standard.

This commitment, following Debra CEO Jimmy Fearon’s meeting with Health Minister Stephen Donnelly, includes €670,000 annually for the HSE to build a more reliable, integrated system of care for people with EB. Here’s what it means:

• Build a sustainable integrated community nursing care brings relief to those managing the immense physical and emotional demands of EB.
• Additional €30,000 for adult psychological support, and a
• Bandage supply scheme

This victory is a direct result of years of hard work and advocacy by Debra and the entire EB community—people like you, who inspire us every day to keep pushing for change.

“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,” said Mr Fearon.

“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.”

Our role moving forward

While we’re excited about this funding, our support to people living with EB goes far beyond medical needs. We’re here to continue to provide emotional support, to offer a listening ear, and to keep fighting for the research and community resources that truly make a difference.

This funding commitment is a huge step forward, but it’s only part of the journey. We’ll be working closely with the HSE to make sure this support reaches your family and others who need it most. And, of course, we’ll continue to stand with you, not just as advocates, but as a community.

We will work to ensure the funding is included in annual health budgets, should there be a change of Government following the general election.

“This commitment to fund Debra on an annual basis is a big leap forward, our goal was to ensure that when a baby is born with EB or when someone gets a diagnosis, they are guaranteed the right level of medical care right thought the different stages of their life. We will continue to support everyone in the EB community with their psycho social needs.