To people just becoming educated about epidermolysis bullosa, it may come as a surprise to see how far-reaching efforts are to raise awareness and research dollars to find a cure (long-term) and better treatments (short-term) for those diagnosed with EB. For example, did you know that there are several dozen different national DebRA groups across the world…from nearby Mexico, Canada and here in the U.S. to across Europe and its various organizations and as far reaching as China, Malaysia, Russia and Japan?
The global network known as DebRA International serves as a centralized hub online for people to gather information about the 48 different national groups as well as their website addresses and contact information. We’re constantly trying to stay abreast of EB headlines across the world and are frequently impressed with what we hear taking place not just here with DebRA of America, but in other countries, too. For instance, DEBRA Ireland has done quite a bit to engage its various communities with unique events and opportunities to educate. Recently, they hosted a family day and their current online calendar reflects a diverse mix of fun and memorable ways to connect including a motorbike run, a dance marathon, building event and even a coast to coast, multi-sport challenge which is sure to garner a lot of media attention and participation nationwide.
Throughout the year, DebRA International is also instrumental in the coordination of conferences across the world to bring together scientists, activists and others deeply involved in the cause for discussions about gathering funds and conducting clinical research, including one just held in late May in Lisbon. In September, a second annual EB conference will be held in Salzburg and later that same month, DebRA’s International Annual Congress in Rome. These are wonderful opportunities for people to share valuable information, insight and avenues to collaborate or pool resources globally where it makes sense.
In this country, we still have work to do across the various EB-focused organizations to raise EB awareness and research dollars, not solely DebRA of America but the other very active groups such as EBMRF and Jackson Gabriel Silver Foundation, among others, as well. It is comforting to know that we are not on this mission alone and that every time there is a small victory for any one of our various groups championing the cause for individuals and families impacted by EB across the world, it is in fact a huge victory for all of us.