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EB 2015 - Insights into the EB research symposium

The 2015 EB research symposium was jointly organised by DEBRA of America and DEBRA International. It brought together many of those committed to find a cure, or to alleviate the symptoms of EB. Brett Kopelan, CEO of DEBRA of America, reflects on this key event of EB research.

"I wanted to take a few minutes and reflect upon the research symposium we hosted in Braselton, Georgia this past week and share some insights. First and foremost, this conference is organized every 3 years and allows researchers, some of whom treat those with Epidermolysis Bullosa and some who do not, to share their work, insights and questions in a setting that allows for unadulterated conversations.

This symposium is designed to provide a better platform for those committed to investigating EB than the traditional professional conferences, like the American Academy of Dermatology, the Society of Pediatric Dermatology or the Society for Investigative Dermatology and even the debra of America Patient Care Conference.

It's not that the symposium is better, it's that it provides a more dedicated platform for questions, critiques and overall conversations about the specific scientific work. Most importantly, this symposium allows for the researchers to explore collaborative opportunities.

With all that in mind, I can say without hesitation, that this conference was a complete success. One of the most important takeaways from the conference for me was seeing not only the overall progress in the well-known research initiatives, but also the numerous other avenues being investigated for all types of EB, not just dystrophic.

Now we are looking at symptom relief as well as the prospect of a systemic cure. There was talk of understanding why itching occurs on a molecular level in EB and how to alleviate it, of locally treating non-healing wounds, of diagnosing and of the next level of sequencing not only single genes but also exome sequencing.

'Even though we didn't hear of any major breakthrough we all share the impression that EB research is speeding up dramatically and that we can expect a striking number of new clinical trials and some new medical products in the very near future', says Rainer Riedl, President of DEBRA International and CEO of DEBRA Austria, and more importantly a father to a RDEB young woman.

There is a reason why Rainer is right on target with his thoughts. In having exposure to other rare disease organizations as Chairman of the Board of Directors at the National Organization of Rare Disorders (NORD), I find that researchers in our disease state work more collaboratively than in others. I think it partially has to do with the severity of EB but more importantly it is the result of the fact that these internationally renowned researchers respect the quality of everyone's work and recognize the importance of working together.

I was given the opportunity to speak for all of us during the conference. I spoke not as the Executive Director of debra of America, but as a father of a RDEB child. My talk was inspired by the issues that were expressed to me during the debra of America Patient Care Conferences and during numerous phone calls when at times I wore my debra of America hat and at other times my parent hat. I referenced a study in Spain about what are the important topics of research from the patient perspective. I drew inspiration from siblings, from parents and most importantly from my experience as a father and as a clinical trial participant.

It is important for those working on understanding the disease to those who are developing treatments, to hear and see the patient and parent perspective. I think it helps guide them and remind them what and for whom they are fighting. Our perspective was heard, for that I promise.

Given that we brought those working in EB from all around the globe, and it only happens every three years, I thought it was an incredible opportunity for a different type of collaboration. I extended invitations to the EB Research Partnership (EBRP), the EB Medical Research Foundation (EBMRF), and the Sohana Research Fund (SRF) to join us for the conference. I was very enthused that Alex Silver, Heather Fullmer, Paul Joseph, and Sharmila Nikapota were able to join us. It was an opportunity for all of us, EBRP, EBMRF, SRF, debra of America and DEBRA International to discuss ways to drive the process and the research forward. We are all striving for the same thing, to end the pain, suffering and stress that is inherent in all types of EB."

Brett Kopelan, Executive Director, DEBRA of America

Stack of conference programmes on a table, showing an image of the DEBRA campaign: An animal half rabbit, half hedgehog; above it the tagline "This is how life feels for people with EB"

Group picture of participants in the conference room

Posterwalk in the lobby of the hotel

Front view of the conference venue "Château Élan"