DEBRA International Congress 2012

Last month, I had an opportunity to attend DEBRA International’s annual meeting of DEBRA groups from countries all around the world. DEBRA Canada and Canada’s Hospital for Sick Children (“Sick Kids”) served as hosts for the DEBRA International Congress 2012, which ran from Sept. 13-16, 2012, at Toronto’s Fairmont Royal York Hotel. It was a fascinating and educational experience to be able to interact with a mix of physicians, nurses, researchers and families representing 25 countries, all coming together to share information and collaborate on common goals for the benefit of EB families.

DEBRA International made it known at the event that one of its top priorities is to encourage collaboration among the various DEBRA organizations worldwide to define and establish EB care guidelines in a number of clinical areas to be published on its website as well as within medical journals throughout the world. Their goal is for these guidelines to be made available to physicians everywhere to better understand the EB patient and best serve these patients and their families. Once created, the guidelines will be made available in as many languages as possible to serve medical communities across the world. But as with any set of guidelines, creating these take time. There are currently efforts in place to establish wound care, nutrition and pain management guidelines, and dental guidelines were just formally published by the group last month. Click here for the link to DEBRA International’s dental guidelines for EB patients.

This year’s program was broken out in such a way that each day had a different focus. Day One featured segments on EB family topics, including pain management, school issues such as bullying, skin care and nutrition. Day Two concentrated on the various care guidelines that several countries have in development with particular emphasis on the various wound care efforts from Italy, Canada’s Toronto Accord and the UK.

Day Three was all about research and offered a closer look at the EB studies in progress currently as doctors from across the world discussed their work. Dr. Jakub Tolar addressed the congress about his bone marrow transplantation procedure; Dr. Peter Marinkovich introduced his study, gene transfer for human recessive dystrophic EB; Dr. David Woodley discussed protein replacement therapy; Dr. Sarah Atkinson of the UK discussed her siRNA Therapy study; and Dr. Gabriela Petrof also of the UK shared the latest about her clinical trial studying the role of allogeneic fibroblast cell therapy in RDEB patients. During the final day of the conference, Day Four, attendees were able to be part of break-out workshops covering such specialized topics as nursing, nutrition, physical and occupational therapy and psychosocial issues associated with EB.

During the conference, DEBRA International unveiled its newly upgraded website and gave others a chance to educate attendees about their programs. For example, I learned about EB Without Borders, a group of DEBRA organizations from around the world who have joined forces to support EB patients and their families in those parts of the world where there is no DEBRA organization already established. And once again, I had a chance to meet up with the EBCare registry team, a group gathering data to establish an EB database. I learned something new that I was not aware of – that those families like mine who had lost a child previously to EB can also register with the database; it is not solely families currently facing it on a daily basis. Their representatives encouraged all families at any time impacted by EB to get in touch with them to get registered and become part of this valuable international database. The more information they are able to gather, the more thorough and complete picture they can build about EB families – who they are and how they are being impacted by this devastating disease.

All in all, it was an enlightening conference for attendees fortunate enough to take part. I’m happy to be back home from travel time away from the family, but it was educational and very encouraging to get to hear from and meet so many people committed to working together to better understand EB, to improving treatments for EB and to developing a cure.

For more information about this year’s event, check out DEBRA International’s 2012 Congress website at www.debracongress2012.com.