EB2020: 1st Global Congress on Epidermolysis Bullosa
From 19-23 January 2020, the EB2020 Research Conference, the 5th Conference of EB-CLINET as well as the DEBRA International Congress were held together in London as the '1st Global Congress on Epidermolysis Bullosa'.
This ground-breaking meeting brought together all global knowledge in EB research, clinical management, and the EB Community with around 700 delegates from more than 50 countries. The pooling of state-of-the-art expertise across the key stakeholders provided a great update on current research, clinical trials as well as clinical care and helps in the development of strategies for the research, regulatory, funding, and healthcare communities.
The first two days of the conference focused on current advances in EB research. The top researchers gave an update on cell, protein and gene therapies as well as on the management of inflammation, fibrosis and cancer. From basic research to translational projects on their way to clinics a huge variety of projects were presented, showing the effort made all around the world to understand disease mechanisms and finding new and effective treatment options. About 30 clinical trials are ongoing worldwide to test new therapies for EB – a number that gives hope that some treatments will be available soon.
The third day of the conference was all about clinical management of the disease. The day was started off with a short update about EB-CLINET by Dr Sophie Kitzmüller. New clinical management strategies were presented as well as recently published clinical practice guidelines (CPGs) for EB. The clinical management for EB has substantially improved over the last years, and the international and multidisciplinary work on CPGs ensures access to knowledge about state of the art treatment. An infographic guideline, which was especially developed for remote and resource poor areas, was launched as well as the first patient versions of five of the already published CPGs. These are now available for download on the DEBRA International website
The fourth and last day of the conference focused on the people living with EB. They received an update about research as well as clinical trials in lay terms. Patients and their families also had the opportunity to share their point of view on different subjects (e.g. clinical trials, measurement of quality of life) and to ask questions to clinicians and researchers alike. This valuable input from people directly affected by this disease helps scientists to prioritize research projects and clinicians to develop feasible protocols.
EB-CLINET was present with an exhibition stand which we shared with DEBRA International and the EB Research Network and we had the opportunity to talk to and connect with many clinicians, therapists, patients and researchers from all over the world. In her update on EB-CLINET’s activities, Dr. Sophie Kitzmüller mentioned recent developments like the Nursing Forum for EB Care, the new EB-CLINET website and our newsletter.
We look back at a very inspiring and encouraging congress and we are very motivated to keep working to #fightEB.