Patient and Public Involvement

The team at DEBRA Ireland work tirelessly to drive research into new treatments for EB. However, in research, we are sometimes missing the expertise of those living with EB on a daily basis. We are working with scientists to bring the patient voice into research, which will help researchers focus on the specific elements relating to EB, developing treatments faster while explaining their scientific studies in easy to understand language.

Patient and Public Involvement is where people living with EB actively contribute to EB research alongside scientists to ensure technologies being develop meet the needs of the EB community.

If you are interested in contributing your lived experience with EB (you have the condition yourself or you are a parent, sibling, relative, friend, carer, teacher, SNA …) to research, get in touch with us to learn more.