The annual DEBRA International Congress took place last week from Thursday 16th until Sunday 19th September 2021. The event was hosted by DEBRA Russia, and although attendees could not be in Moscow in person this year, the charity ensured that the learning experience was as engaging as possible with a stellar line-up of 40 EB experts speaking in a 3D virtual environment. 

About 20,000 participants from 137 countries attended the DEBRA International Congress this year, and despite the strange times we find ourselves in, there were still plenty of opportunities for interaction with virtual networking rooms and Q&A sessions for most presentations. 

The event began with various scientific researchers giving 20-minute presentations on basic and preclinical research. We got to grips with laboratory research findings related to EB and topics such as cancer, stem cells, tissue remodelling and gene replacement therapy. EB experts, such as Prof Andrew South, Dr Isin Sinem Bagci and Dr Joanna Jacow, gave viewers a simplistic overview and a renewed sense of hope on many complex topics related to EB.  As the first day of the congress progressed, we moved on to the topic of the natural history of EB. Again, researchers took to the virtual Medical Track stage, where they discussed the history of EB in relation to areas such as wound and symptom development over the years. This observational research is a key part of understanding EB so more effective treatment options can be created in the future. The first day of the congress ended with some shorter presentations on many different topics. We learned about a topical treatment for wound healing that Krystal Biotech are currently developing and about how a ‘genetic scissors’ may have promise to be a potential treatment for both EB Simplex and Recessive Dystrophic EB. Throughout the four-day event, attendees could also enter the Patient Track stage where they could hear from EB patients across the globe speaking about their lived experience with the condition. 

Day two (Friday 17th) started off with a presentation from Amryt Pharma about where our medicines come from, and how they progress from laboratory research to a treatment option that can be safely used by the public. This linked in nicely to various presentations about how to design an effective clinical trial for EB, as more EB research worldwide continues to progress from preclinical to clinical research. We also got the chance to hear from some EB researchers, such as Dr Su Mar Lwin and Prof Michele De Luca, about EB research projects that have already progressed to clinical trials. We learned about therapies which may reduce and prevent chronic scarring in EB and also about therapies that are being designed to work directly on the cells and genes associated with EB. Prof Amy Paller then spoke about lessons learned from EB clinical research, which was extremely helpful for any EB researchers moving into this phase of their research. Before the day came to a close, we were given an update on how EB patient registries are developing in various countries around the world. 

Over the weekend (Saturday 18th and Sunday 19th) the focus of the congress moved away from research and towards the clinical care of patients who have EB. There truly was support in so many areas of clinical care for the EB community, ranging from topics such as nutrition to dental care and even innovative surgery in EB. Psychological support in EB is something that has been previously overlooked, however on Sunday morning Dr Jan-Sher Bhatti of Great Ormond Street Hospital in the UK, gave a fantastic presentation on how children diagnosed with EB can be best supported psychologically. We also got an insight into multidisciplinary care in EB and how different members of the medical team can best work together to effectively treat patients with the condition, which was particularly beneficial for any health care professionals tuning in. It became very clear to the viewer that it takes medical professionals across all areas of physical and mental health to effectively treat EB symptoms, not just the EB-specialist doctor.  

The event really was a great success, and we would like to thank our colleagues in DEBRA Russia for organising this year. We look forward to attending next year’s congress, hosts and location to be announced shortly. 

Many presentations from the Congress are available on YouTube    

For more information or to discuss any of the research presentations please feel free to contact us at [email protected]