Debra Ireland’s Rare Disease Day 2026 campaign: disability parking access

For Rare Disease Day 2026, Debra Ireland is running a national advocacy campaign focused on a very practical issue affecting people living with EB: access to disability parking.

The Irish Disability Parking Scheme relies heavily on distance-based questions, such as whether someone can walk 150 metres. For people with EB, this approach does not reflect reality. A person may technically be able to walk that distance, but doing so can cause serious pain, skin breakdown and lasting injury.

Because the system does not take this functional impact into account, people with EB in Ireland are often told they do not qualify for a permit, even when parking closer to their destination is essential for managing pain, preventing wounds and maintaining independence. The Irish 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.”

Debra Ireland highlights that this is not about convenience. Disability parking can determine whether someone can attend work or school, access healthcare, or take part in everyday community life.

What Debra Ireland is calling for

Through its Rare Disease Day 2026 campaign, Debra Ireland is calling on the Minister for Transport to reform the Disability Parking Scheme so that eligibility is assessed based on real-world impact and lived experience, not just walking distance.

The campaign argues that the current criteria fundamentally misunderstand EB and other rare conditions where mobility is complex and unpredictable. Debra Ireland is asking for an assessment process that recognises pain, skin damage, fatigue and recovery time as legitimate mobility barriers.

From awareness to change

Rare Disease Day is about raising awareness, but this campaign is focused on change. Debra Ireland is using lived experience, evidence from the EB Butterfly Review, and direct advocacy to push for a fairer system that reflects how EB affects daily life.

The aim is simple: to ensure that people living with EB can access the supports they need to move through the world safely, with dignity, and with fewer unnecessary barriers.

More information: https://debra.ie/our-campaigns/rdd2026/