Dystrophic Epidermolysis Bullosa Research Association of America (debra of America)
- New York
debra of America is the national nonprofit organization dedicated to improving the quality of life for those living with the connective tissue disorder Epidermolysis Bullosa (EB). “Because the cost of doing nothing is too great” is an axiom that defines our mission and directs all of debra of America’s daily activities. To achieve our mission, we do two things in parallel: we provide free services through our programs to the EB Community in the U.S. and fund the most innovative research directed at symptom relief and a systemic cure.
About Epidermolysis Bullosa (EB)
Epidermolysis Bullosa (EB) is a rare connective tissue disease with many genetic and symptomatic variations. All forms of EB share the prominent manifestation of extremely fragile skin that blisters and tears from any friction or trauma. Disease complications and secondary illnesses caused by EB range from life-altering to life-threatening. As of today, there is no cure or FDA approved treatment. Pain management, proper wound care and protective bandaging are the only current options available. The past five years have brought an unprecedented growth of: academic research in top institutions; number of active clinical trials; and, number of biotechnology and pharmaceutical companies engaged in therapy and drug development to cure and treat the “the worst disease you’ve never heard of”.
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