Cross-Party Briefing with Debra Ireland

24th of October 2025 - I recently held an AV Room briefing in Leinster House with Debra Ireland for Members of the Houses of the Oireachtas. Debra Ireland does incredible work for those suffering with EB (epidermolysis bullosa) which is an incurable genetic condition that affects the skin.

Representatives from the organisation, including those affected by the condition and their families, spoke passionately about how this impacts them on a daily basis, as captured in their new EB (epidermolysis bullosa) Butterfly Review.

The EB (epidermolysis bullosa) Butterfly Review recently conducted by Debra Ireland was commissioned to better understand how people with EB in Ireland access healthcare, community, and welfare support services, and to identify the barriers and unmet needs they face.

The goal of the review is to identify systemic gaps and provide a roadmap for improvements that could significantly enhance the quality of life for those impacted by EB.

I commend those who contributed to this discussion and detailed the ongoing struggles they face with the recognition of this rare disorder. I look forward to working with colleagues from across the Oireachtas to further support those with EB.