Every year, we put the needs of the EB community directly in front of Government before the Budget is set. Our pre-budget submissions are built on evidence and shaped by your experiences, making the case for the funding and supports that families living with EB need. For Budget 2028, we are gathering the evidence to back a National Bandage Scheme, alongside our wider asks for better access to care, treatment and financial support. We will keep returning, year after year, until these commitments are delivered.

For someone living with EB, even a short walk can mean real pain, skin damage and days of recovery. Yet the way disability parking permits are assessed in Ireland often misses this completely, because the rules look at narrow medical criteria rather than how someone's condition actually affects their daily life. We think that is wrong, and we are campaigning to change it. We launched our disability parking campaign in February 2026, alongside Rare Disease Day, calling on the Minister for Transport to reform the assessment system so that permits are based on genuine functional need. The scheme is now under review, and the more voices we add, the stronger our case becomes.

Wound care is a daily reality for people living with EB, and the cost of dressings and bandages adds up to a heavy and constant financial burden for families. We are campaigning for a National Bandage Scheme to ease that pressure. We began building the evidence in early 2026, and we are preparing a pre-budget submission so that this becomes a funded commitment, not just a good idea. It was one of the clear asks of the EB Butterfly Review, and we are determined to see it delivered.

EB does not stop at childhood, and neither does the need for specialist care. As young people move from children's services into the adult system, too many face a gap at exactly the point they need continuity most. We are working to change that. Alongside Children's Health Ireland, we are helping develop clear transition guidelines so that moving into adult care is smoother and better supported. We are also pushing for properly resourced specialist teams and for care closer to home, so that adults living with EB can access the expert, joined-up care they need wherever they live.

Each year we support Rare Disease Day on 28th February to raise awareness for the 300,000 people in Ireland living with a rare disease. It can be exhausting for people with a rare disease, such as EB, to constantly have to explain their condition to others. We want to increase knowledge of EB, especially amongst medical professionals and researchers, so if they meet someone with EB, they’ll have a better understanding of the condition.

Real change happens when the people who make decisions understand what living with EB actually means. That is why we work all year round to build a network of political champions who will stand up for the EB community. As well as campaigning, we speak directly to those in the health system, to ensure people impacted by EB get the services and supports they need. This includes engaging with local community health teams, the teams in the hospitals and with HSE representatives at the highest levels.

For a long time there were no treatments approved specifically for EB. That is finally beginning to change, and your voices have helped make it happen. Working with the community, we brought the patient voice directly into the assessment process for Filsuvez, the first EB-specific treatment approved in Europe. Filsuvez is now available in Ireland, a real milestone for the EB community. But the work is not finished. Vyjuvek, a treatment for wounds in people with Dystrophic EB, was approved in Europe in 2025 and is still not available here. We are campaigning to change that, so that people living with EB in Ireland can access the treatments available to others across Europe.

In 2024 the Government committed €700,000 towards EB care. We welcomed that, and we have continued to push hard ever since, because a commitment on paper means nothing until it reaches families. That funding has now been allocated, but there is still no clarity on how it will be used, and it has not yet translated into the care coordination and continuity of care that people with the most severe forms of EB urgently need. We are working with the HSE and the Department of Health to make sure it is delivered without further delay. We have also secured €125,000 in direct funding for our Family Support Services two years running, helping us strengthen the support we offer to EB families every day.

Living with a disability brings extra costs that most people never have to think about. For EB families, those costs are significant and unavoidable. We made a submission to the Department of Social Protection's consultation on the Cost of Disability, gathering your experiences through a survey and a focus group so that families were properly represented. As the Government works towards a permanent Cost of Disability Payment, we will keep pushing to make sure people living with EB are not left at a financial disadvantage because of their condition.