What is EB?
Epidermolysis Bullosa, also known as EB, is a rare genetic skin disease characterized by the presence of extremely fragile skin and recurrent blister formation resulting from minor friction or trauma. People with EB are often associated with butterflies, because their skin is as fragile as a butterfly’s wings. EB affects both the external skin and internal organs/tissue.
The sites below provide more information about EB, as well as link you to some current research news.
EBMRF (Epidermolysis Bullosa Medical Research Foundation)
EB Medical Research Foundation (EBMRF) is a volunteer, non-profit foundation dedicated to the support of medical research of EB, its causes, the development of successful treatments, and ultimately its cure.
dEBra (Dystrophic Epidermolysis Bullosa Research Association of America)
The Dystrophic Epidermolysis Bullosa Research Association of America (dEBra) is a non-profit organization dedicated to both promoting research to find new treatments and a cure for EB and providing information and support for people with EB and their families. Extensive information about EB can be found here.
EB Center at Cincinnati Children’s Hospital
The EB Center at Cincinnati Children’s is one of a few in the nation that provides comprehensive care for EB. A truly amazing hospital with extremely dedicated doctors, nurses, and staff.