Together we can do more!

Over 730 delegates representing 215 organisations from more than 50 different countries gathered at the EB World Congress 2020 which took place from 19 to 23 January 2020 in London.

DEBRA UK hosting this international congress with a four-day programme, exciting side fora and social events. Bringing together global knowledge in EB research, clinical management, and the EB patient community. 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 support in the development of strategies for the research, regulatory, funding, and healthcare communities.

From basic EB research to clinical trials

The first two days of the conference focused on current advances in EB research. Leading international EB researchers gave updates on the status of development of cell, protein and gene therapies as well as on the management of inflammation, fibrosis and cancer. From basic research to clinical translation, a huge variety of projects were presented, illustrating then global effort to elucidate diseas mechanisms and create new and effective treatment options. Currently, around 30 clinical trials, some late-phase, are ongoing worldwide, giving hope that effective treatments will enter the clinic in the near future.

The third day of the conference was all about the clinical management of the disease. Starting with a short update about EB-CLINET, the international network of EB clinicians. New clinical management strategies addressing the  major clinical challenges for all EB types were presented as well as recently published clinical practice guidelines (CPGs) for EB. The clinical management for EB has improved substantially over recent years, and the international and multidisciplinary work on CPGs ensures wide access to information on state of the art treatment. An infographic guideline, specially 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

Patients' perspectives

The final day of the conference focused on people living with EB - patients and their families and carers. They received an update on 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 trial participation, measures of quality of life) and to ask questions of clinicians and researchers alike. This valuable input from people directly affected by this disease helps scientists to prioritise research projects and clinicians to develop patient-friendly, practical protocols for both clinical trials and daily care.

EB-ResNet at the EB 2020 world congress

EB-ResNet was present with an exhibition stand shared with DEBRA International and EB-CLINET,  providing the opportunity to talk to and connect with many clinicians, therapists, patients and researchers from all over the world.

EB-ResNet also organised the second Industry Partnering Panel (IPP) meeting during EB2020. The IPP idea has been established to expedite translation of posssible EB therapies into the clinic through collaboration among stakeholders to address key pre-competitive challenges. The first IPP meeting was held in 2017 at the EB research conference in Salzburg (Meeting summary 2017 can bdownloaded in the Industry partnering section). This time about 30 representatives from the pharma industry were invited to discuss current challenges and find ways to work more efficient and collaborative in future.

We look back at a very inspiring and encouraging congress and we are very motivated to keep working to fight EB.

More pics: https://ebworldcongress.org/media/photos/