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Prioritising EB care means investing as little as two cups of coffee per person with EB a day.
Celebrated every year between 25th and 31st of October, EB Awareness Week is an opportunity to raise public awareness and understanding of epidermolysis bullosa, promote the need for treatments and a cure, and to spur advocacy on behalf of those impacted by EB.
To kick start the week, on October 24th we delivered a political briefing to launch our report ‘Life with EB in Ireland: An international review of quality-of-life and comparison of access to healthcare resources and government supports’, prepared in collaboration with the University of Limerick’s Kemmy Business School.
Hosted by Mr. Chris Andrews T.D., Debra Ambassadors Emma Fogarty and Liz Collins, and Dr Darragh Flannery, Associate Professor in Economics at the University of Limerick, highlighted the important findings from our report and discussed the needs of people with EB.
The key findings in the report are based on an international review of quality-of-life and comparison of access to healthcare resources and government supports in different countries.
The following recommendations are based on the findings of this research, alongside recommendations of the Rare Disease Taskforce and those set out in our 2024 pre-budget submission.
If you’d like to read the recommendations in detail, download our report.
EB is a serious, chronic, incurable condition and as such it should be included in the Long-Term Illness scheme.
Funding for an EB-specific bandaging and dressing material scheme should be provided.
Extra funding should be provided to help appoint a clinical psychologist dedicated to supporting adults living with EB.
The provision of regular, reliable home nursing care for those living with more severe EB should be significantly enhanced.
Greater research into the quality-of-life of people living with EB in Ireland should be undertaken.
