Run to 40 was born in January 2024, named as a play on Emma’s milestone birthday and the nearly 42 kilometres she and Colin would take on. Our goal was ambitious—€400,000, a bold target for a charity of Debra’s size. More than a fundraiser, it became a movement, raising awareness, driving action, and securing vital funding for EB research and support. It would go on to be Debra’s most successful fundraising campaign ever, proving the power of community and shared purpose.

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.

In 2022, we raised awareness on the importance of home nursing care and the role of carers. No parent should be forced to provide this complex care themselves due to a lack of resources. Bandage changes involve intense physical pain, making it particularly difficult and emotionally draining for parents and loved ones.

As a result of the campaign, over 1,000 people asked the Minister for Health to invest and prioritise EB care. This was also a key focus of our Pre-Budget Submission Campaign in 2023.

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.