Kids diagnosed with EB, or Epidermolysis Bullosa, have skin as fragile as a butterfly’s wings.
DEBRA stands for Dystrophic Epidermolysis Bullosa Research Association, the patients association for this fragile skin disorder which affects about one in every 35,000- 50,000 people of both genders and every ethnic and racial group.
Children develop painful blisters and open wounds from the simplest of activities such as tuning over, or crawling. Always painful, EB varies in its severity, sometimes affecting internal organs, and in some cases leading to early death.
Like so many rare diseases, there is no cure, but there are promising clinical trials which approach this condition through different mechanisms of action. For more information on clinical trials that are currently enrolling click here.
Debra International operates in 32 countries, and provides patient support worldwide. If you know someone with this rare condition, encourage them to attend the DEBRA Care Conference Sunday, July 24 – Wednesday, July 27, 2016.