For people living with EB, even a short walk can lead to blisters, broken skin and serious pain. Getting from a car to a building can mean days of recovery.
That’s why we are asking the Minister for Transport, Darragh O’Brien, to change the rules around the Disability Parking Scheme so that people with EB who need a blue badge can actually get one.
Nearly 1,500 of you signed. You shared. You spoke up. You helped bring this issue into national conversation – across media, in political spaces, and in the Dáil. What can sometimes feel invisible suddenly wasn’t.
That is what collective action looks like.
Disability parking is not a nice to have. For people living with EB, it is the difference between being able to live their life or having to stay at home.
So we’re not stopping here. We’re taking your voices directly to the Minister for Transport, Darragh O’Brien – presenting your signatures and pushing to expand eligibility so people living with EB are no longer excluded.
With the system now under review, we have a real chance to close the gap between what people with EB need and what they can access. We’ll keep working with clinicians and other groups to make sure the solution works in practice.
Change doesn’t happen overnight – but it happens when people like you, First name, keep showing up and pushing. This campaign proves it.
EB is a rare, genetic skin condition that causes extreme skin fragility, blistering, chronic wounds, pain, fatigue, and progressive mobility impairment. Walking — even short distances — can be painful, damaging, and medically harmful.
Yet people with EB are routinely denied disability parking permits because the current eligibility criteria rely on medicalised, severity and over-simplistic distance-based questions, such as whether someone can walk 150 metres. If an applicant answers “yes”, the system automatically blocks them from even completing the application.
This fundamentally misunderstands EB.
Walking distance does not equal functional mobility.
A person with EB may technically walk 150 metres, but at the cost of severe pain, skin damage, open wounds, infection risk, and prolonged recovery time.
Mobility impact in EB is variable, fluctuating, and cumulative.
Eligibility based on severity poses problems. Pain, blistering, bandaging, footwear limitations, temperature, fatigue, and wound care all affect day-to-day mobility — none of which are captured by the current metrics.
Access is inconsistent and inequitable.
Some people with EB obtain a badge through persistence, advocacy, or luck, while others are excluded entirely. This creates a postcode lottery rather than a fair system.
The application process itself is a barrier.
The initial gate-keeping questions prevent nuanced medical evidence and the ability to participate in society from ever being considered.
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What’s needed instead is a system that respects the rights of people with EB and supports them to live independently — to get out into their community, to work, and to take part in everyday life.
The United Nations Convention on the Rights of Persons with Disabilities (UNCPRD) which Ireland has signed up to, already recognises this. It states that people with disabilities should be supported to move around safely, live independently, and fully participate in society.
We need a parking system that is fair, clear and consistent — one that recognises the impact of EB and ensures that anyone who needs a disability parking badge can access one, without unnecessary barriers.
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Debra is the only charity in Ireland supporting people and families living with EB. Every day, our community faces pain, fragile skin, medical costs and isolation — and every single euro you donate helps meet the practical, emotional and financial realities of life with EB.
Donate €10 and wear your support with pride with our campaign pin badge – a small badge with a powerful message. Wear it proudly, start conversations, and help show families living with EB that they are not alone.
Your support matters. Your donation matters.
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We ask the Government to listen to the EB community, honour the recommendations of the EB Butterfly Review, and act now.
The EB Butterfly Review clearly highlights the need to improve accessibility and lived experience for people with EB.
Under Theme E: Improve care accessibility and experience, the Review specifically recommends: “Continue to advocate for the introduction of free public transport and/or disability parking passes for individuals with EB, to promote access to these services.”
This is not a new or untested proposal — it is an evidence-based recommendation already recognised at national policy level.
We are launching this campaign on Rare Disease Day because it is about visibility, voice, and action.
Rare Disease Day is a global movement that shines a light on the 300 million people worldwide living with a rare disease. It is a day to be seen, to be heard, and to remind decision makers that rare does not mean insignificant.
For people living with EB, the challenges are not rare at all. Pain, barriers to mobility, and unequal access to basic supports are part of everyday life. Too often, people with EB are asked to prove their pain again and again just to access essential services.
Rare Disease Day gives us a moment to turn awareness into action.
By launching this campaign on Rare Disease Day, we are calling on government to listen to lived experience, to act on the recommendations of the EB Butterfly Review, and to ensure that people living with EB can access the mobility supports they need to fully participate in society.
No one should face a rare condition alone. And no one should be left behind because the system does not understand their reality.
