Advocacy Studies – Services and Awareness

While we have long been focused on biomedical research aimed at developing treatments and cures, we also believe it is essential to undertake research focusing on the impact of EB on a family and the support systems available to them. We call these advocacy studies as the results help us advocate for better services for families with EB. As EB is a rare disease, it is difficult to capture sufficient data as there are fewer people with the condition and families may not be readily available to contribute. Despite this, we have partnered with various universities over the years to perform a number of advocacy studies:

1. Cost of Illness of EB

Having EB is costly. This is one of the biggest challenges families with EB face, based on the latest DEBRA Ireland survey. The difference in costs vary according to the severity of EB. Treatments are in development and because the condition is rare it will be necessary to compare the cost of new treatments with the cost of not treating, in order to make an informed budget decision. Given the rarity of EB, there has been minimal research conducted from a cost point of view. This study is a small snapshot of the formal costs captured by a small number of families living with EB, such as hospital stays, medicines and bandages. It did not detail the financial burden of informal costs such as bandage changes nurses and PA’s (personal assistants) etc.

This study was performed by Dr Darragh Flannery and Claire Doyle in the Kemmy School of Business, University of Limerick. Please see details of the study and its results in the published paper and the poster below:

2. Living with Epidermolysis Bullosa: Daily Challenges and Healthcare Needs

This study focused on describing and exploring the health-care needs of children, adults and families who are affected by EB. The aim was to identify the needs of the EB population to inform the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB

The study was performed by Sandra Kearney, Dr Ann Donohoe and Professor Eilish McAuliffe in the School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland

3. Adopting a Sustainable Community of Practice Model When Developing a Service to Support Patients with Epidermolysis Bullosa (EB): A Stakeholder-Centered Approach.

EB is complicated, distressing and painful and permeates every aspect of patients’ lives. Support services are essential for meeting the primary needs of patients and families living with EB; however, provision is challenged by many complex issues. This research conducted and in-depth analysis of Irish healthcare support services for EB, with a view to moving towards an improved and sustainable care pathway.

This study was performed by Rosemary Gowran and her team at the School of Allied Health in the University of Limerick

We believe that the outcomes of these studies will be useful in supporting our advocacy campaigns and in helping to formulate future strategies.