Dystrophic Epidermolysis Bullosa Research Association of Americ

Epidermolysis Bullosa, or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). 

One of our very dear friends, Rafi, was born with one of the worst cases of EB the doctors had ever seen. There is no cure and every day of her life involves bandage changes (on her butterfly skin) and more pain than most feel in a lifetime. There is nothing we as a family feel more passionate about that doing all we can for our warrior friend, Rafi. A day in her life would break down the strongest of people but this amazing young woman continues to fight. Please join us in doing what we can to make her road ahead even the tiniest bit more bearable.  Thank you from the bottom ofour hearts. 


Want to join me in making a difference? I'm raising money to benefit Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (Debra of America, Debra), and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to me.

More information about Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (Debra of America, Debra): DebRA of America's primary objective is to find a cure for Epidermolysis bullosa (EB), a rare connective tissue disorder with many symptomatic and genetic variations. All variations share the common manifestation of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems may be seriously affected in the more severe forms of EB. Debra of America also provides supportive programs and services to those with EB and their families. We also provide educational literature and produce conferences for the patient population and the professional community to increase awareness of this rare disorder. In fact, Debra of America is the only national not-for-profit that supports research while providing supportive and educational services to the EB and professional community.