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.
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.
Our recommendations are based on the findings of this research, alongside recommendations of the Rare Disease Taskforce and those set out in Debra's 2024 pre-budget submission.
This study utilised a bottom up patient survey and showed mean costs ranging from €46,000 per annum in Germany to €9,500 in Sweden. Authors conducted a similar study for the case of Ireland using a sample of paediatric patients and provided an in depth analysis specific to wound care costs and costs across a subjective measure of the severity of the condition.
This guide explains what a rare disease is and how it is defined in health policy; provides insights into living with a rare disease; and provides an overview of policy and research developments at international and national policy levels
The aim of this study was to provide a psychosocial and psychiatric evaluation of patients with epidermolysis bullosa, to assess psychological status, ascertain the presence of any psychiatric disorders and understand the impact of EB on quality of life.
The aim of this study was to determine the social/economic costs and health-related quality of life (HRQOL) of patients with epidermolysis bullosa (EB) in eight EU member states.
The aim of this study was to identify and specify the problems of parents of a child with EB. Qualitative research methodology was used, comprising a series of semistructured interviews with eleven families. The key problems of parents were broken down into three themes, related to the child, the family, and the care providers.