DEBRA Care Conference 2022
The DEBRA Care Conference (DCC), hosted by DEBRA America, took place from 17th to 20th July 2022 in Boulder, Colorado. DCC is one of the world’s largest gatherings of the Epidermolysis Bullosa (EB) community.
The event brings those with EB, their families, advocates, and care providers together with medical professionals, researchers, and medical companies to learn more about advances in EB research and care. As a relatively new member of the DEBRA Ireland staff, working within the research team, I was delighted to get the opportunity to attend my first EB conference along with three of my colleagues.
The most special aspect of DCC, in my opinion, is how it brings families together. It was wonderful to see families who usually attend the conference reconnect with each other. It was also equally wonderful to see new families who had not attended before sharing their experiences with others and making long lasting connections. I think I can speak on behalf of my colleagues in DEBRA Ireland in saying how well organised and family-orientated the conference was – with many talks focused on well-being and practical advice for living with EB, but also with entertainment options to suit all ages. The karaoke night was a particular favourite of ours, although none of us attempted to sing as there were far too many professionals in the audience. We thought karaoke was supposed to be about singing badly but the families of DEBRA America had other ideas and blew us away with their amazing voices!
In terms of research, we were treated to talks from many experts in the field, such as Prof Peter Marinkovich, Prof Andrew South and Prof Jacob Tolar, to name but a few. Prof Marinkovich gave the audience updates on Krystal Biotech’s new gene therapy VYJUVEK, which has been very successful throughout clinical trials in healing chronic wounds of those who live with Dystrophic EB (DEB). Amryt pharma was also in attendance to speak about it’s topical treatment Filsuvez, which is designed to treat wounds in those with Dystrophic and Junctional EB. Filsuvez has been approved in the EU and is the first EB-specific treatment to gain approval, offering great hope to all in attendance. In addition to topical treatments, we also learned about systemic approaches to treatment from companies such as Rheacell and Aegle. One of the major themes from the conference was the incredible advances in therapy development in recent times. Many topics were covered from gene therapy to cancer to eye care, with all talks available to view on EB Connect which can be found here.
On behalf of all who attended from DEBRA Ireland, I would like to take this opportunity to thank DEBRA of America’s Executive Director Brett Kopelan and his amazing team for hosting such a wonderful event. We felt privileged to get to attend and we certainly learnt a lot from the families and experts in the field that we had the opportunity to meet. We hope to see you all in Atlanta for DCC 2024!