The top EB researchers from around the world gathered at the EB2015 meeting in May, for three days of talks, discussion and sharing. This meeting, which only happens every three years, focuses on all aspects of EB research and is a welcome reminder of the progress that we are making, in finding new and better ways to treat EB. It brought some exciting news of developments from those at the frontier of developing therapies for EB.
Some researchers are now testing a ‘patchwork quilt’ approach to healing the skin in EB patients by grafting small patches of healthy skin onto wounded areas. Others are testing whether bone marrow transplants from healthy donors can help strengthen the skin in EB patients. Yet others are investigating whether infusions of stem cells into the blood can help the skin to heal faster. While none of these approaches is a cure, all are showing promise in providing some relief from the relentless and devastating symptoms of EB.
In addition to research into curative therapies for EB, there is now also an increasing focus on research into improving the symptoms on EB, with the hope of providing a better quality of life for those affected. EB is such an incredibly complex condition that efforts are also on-going into understanding more about the effect that it has on a patient’s body over time.
The collaborative spirit and dedication evident at the meeting was heart-warming. Particularly welcome to us also, was evidence of the strong engagement between researchers and patients and their advocates. It was acknowledged widely and frequently at the meeting that patient involvement in research is hugely valuable, in order to help ensure that the outcomes of research are relevant for people who live with EB.
The meeting was hosted by DEBRA of America, in Atlanta, Georgia and they did an incredible job. The first such meeting was in 2006 and was hosted by DEBRA Ireland, in Dublin. Ireland was very well represented at the meeting, with talks from Dr. Wenxin Wang, UCD, on New Gene Delivery Vectors for Gene Therapy of EB, Prof. Martin Steinhoff, UCD, on Itch and EB and Dr. Avril Kennan, DEBRA Ireland, on What Influences Patient Recruitment to EB Clinical Trials.