Annual pre-budget submission campaign - Debra
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Our annual pre-budget submission campaign

Each year, we prepare a pre-budget submission for the Government that highlights the investment that is needed to improve services and supports for people living with or caring for someone with EB.

These pre-budget submissions draw primarily on feedback received from people with EB across the country.

Yearly campaigns

For the third year in a row, the Government has failed to prioritise funding for EB care in Budget 2025

This year, we asked the Government to ring-fence €600,000 for EB home nursing care and invest a further €95,000 to ensure holistic integrated care in line with the vision of Sláintecare (2021).

Many people living with EB are struggling to access vital services and supports, with people often having to fight relentlessly to get what they need. We are calling on the Government to prioritise additional acute and regional supports to meet the unique needs of people living with or caring for someone with EB.
Our "Small ask, big impact" 2024 pre-budget submission campaign

For the second year in a row, we asked the Government to prioritise EB care. By investing €810,000 in mental health support, outreach care, and home care for people living with EB, the Government could have made an immediate, positive impact for the approximately 300 people living with EB in Ireland.
Our 2023 pre-budget submission campaign

In 2022, we asked the Government 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.

Funding for EB care

Pushing for HSE funding details

At the end of 2024, we shared the brilliant news that Health Minister Stephen Donnelly had met with our CEO Jimmy Fearon and committed to spend €670,000 annually for the HSE to build a more reliable and integrated
care system for people affected by EB.

We just wanted to let you know that we’re working hard behind-the-scenes to make sure that funding is delivered as rapidly as possible, so care begins to improve for everyone in Ireland.

We’ve met with Colm Henry, the Chief Clinical Officer of the HSE, and with the HSE’s regional executive officers to highlight key issues, including community nursing care and psychological support.

We always want progress to happen more quickly but, with you by our side, we’ll keep the pressure on to make sure this milestone promise is delivered upon fast.

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