Dr. Sin?ad Hickey:

Unfortunately, technology development takes time. A number of treatments are going through clinical trials at the moment. There are four subtypes of EB but many different subtypes under those as well. A gene therapy will not be a one-type-fits-all treatment. It will be specific to certain types of EB. Hopefully, in the future, each person who is living with EB will have a combination of different treatments to control his or her condition, similar to cystic fibrosis. We spend a great deal of money and put much effort into funding research. We partner with the Irish Research Council and the Health Research Board to fund researchers in Ireland developing treatments and also with the Debra organisations internationally on funding international research. We hope these will all go through that process, which takes years. However, some treatments are coming through the pipeline in phases 1, 2 and 3 of clinical trials. They need to go through those clinical trials, which take years, and then move on through the European Medicines Agency and the National Centre for Pharmacoeconomics. Realistically, we have one treatment, which we discussed earlier, that has been submitted to the NCPE. We hope to get a decision on that in the next few months. The first gene therapy is in the process of being submitted to the EMA. It is already available in the United States where the Food and Drug Administration approved it last year. That is having a significant affect on people with recessive dystrophic EB, a certain type of severe EB. The horizon is looking good but it will be a long time before we see really significant differences.