For families affected by EB, securing the right care has long been an uphill battle. Every dressing change, every call to a nursing agency, every hospital visit is a reminder that the support system simply isn’t built for the
realities of living with EB. In 2024, that finally began to change.
For years, Debra has been advocating for a healthcare system that recognises the unique and complex needs of people with EB. That fight intensified as we prepared our pre-budget submission for 2025, calling on the government to prioritise funding for EB care. But statistics and policy briefs can only go so far. Real change happens when the human impact is impossible to ignore.
In November 2024, a long-awaited breakthrough. Health Minister Stephen Donnelly met with Debra and made a historic commitment:
€700,000 annually to improve EB care. This marked a major shift in how the government approaches EB, promising a more integrated
and reliable system of support.
For the first time, there was concrete funding to provide community nursing, ensuring people with EB wouldn’t have to rely on a patchwork of agencies. There was a dedicated budget for psychological support, recognising the toll EB takes not just on the body but on mental health. And crucially, there was a commitment to a bandage supply scheme, removing the financial and logistical burden that so many families had been forced to shoulder alone.
This is the result of years of tireless advocacy and will significantly improve quality of life.
Securing this promise was a huge step forward, but turning words into action takes time. Now, our focus is on ensuring that the funding is delivered – and fast.
Since the announcement, we’ve been working closely with the Health Service Executive (HSE), meeting with senior officials, including Chief Clinical Officer Colm Henry, to ensure the promised investment leads to real, tangible improvements for families. Systemic change doesn’t happen overnight, but we will keep the pressure on, making sure this funding isn’t just a headline but a lifeline.
For the EB community, this is more than a policy win. It’s a sign that, at last, their voices are being heard. And with that momentum, we will keep pushing for a future where no family has to fight alone for the care they need and deserve
Liz Collins, Parent Ambassador
