EB Community Goes Beyond Sea to Shining Sea

 

As we Americans recover from our Independence Day festivities, I thought I would take a moment to remind all of us just how broad the EB community is. Because it is such a rare disease, EB families can feel alone sometimes or like they are part of a very small network of communities scattered across different parts of the country. But as a greater number of people become familiar with epidermolysis bullosa here as well as abroad, the community at work to raise EB awareness and research funds, and tackle the clinical challenges at hand becomes bigger. International efforts are in place across the globe to find better treatments and work toward a cure.

 

In addition to the Debra International alliance hub based in Vienna, Austria, there are 50 Debra member groups established throughout the world. Besides debra of America, a number of very active networks support EB families in Australia, Canada, the United Kingdom, Ireland, France, Germany, India, Italy, Japan and Switzerland, to name only a few.

 

There are also research clinics and universities who have committed to Debra International’s EB-CLINET Partner program, a network of EB centers and experts designed to establish a centralized global site for the exchange of EB knowledge and clinical experience. Members of this international network are scheduled to meet at its fourth conference this September in Salzburg, Austria. It will provide participants a helpful, in-person opportunity to interact and share valuable clinical information with each other.

 

EB without Borders is another program that has been established (through Debra International) to support EB patients and their families in countries where there may be no support or debra member group yet established. Participating Debra member groups who support this initiative might provide these other countries in need mentoring support for the physicians trying to help the families, or other specialized services, supplies or knowledge.

 

EB clinical research and awareness campaigns are underway around the world. Though it may feel at times like we are alone as EB families, thousands of people across the world are not only facing similar challenges but have set out to conquer the same goals in mind: creating better treatments for this disease and hopefully one day eradicating it completely.