From 2014 – 2018 we will continue to provide care, support research and act as a voice for our patients.
We also plan to make an even greater impact, with the following major programmes:
- EB Community Care Programme – A DEBRA funded EB nurse, working from Crumlin Children’s Hospital will visit patients at home. The reassurance that this service will provide to patients is priceless
- Race Against Time Research Programme – The is currently no cure for EB so our patients live, not only with the reality of EB day-to-day, but also the threat of skin cancer in the future. That said, we are closer to a cure than ever before. Our research strategy has two major focuses:
- Being a major part of the DEBRA International efforts to develop therapies for EB including gene, protein, cell & drug therapies
- Investing in EB research in the Charles Institute of Dermatology, UCD, the only academic institute in the world solely devoted to skin research
- Excellence in Clinical Practice Programme – DEBRA is leading the development of a series of EB best clinical practice guidelines. This means that whenever an EB patient needs care, e.g. dentistry, the clinician has access to the very latest guidance in how best to care for a patient with EB.