Junctional Epidermolysis Bullosa Incidence and Survival: 5‐Year Experience of the Dystrophic Epidermolysis Bullosa Research Association of America (DebRA) Nurse Educator, 2007 to 2011

Junctional epidermolysis bullosa ( JEB ) is a particularly devastating type of epidermolysis bullosa, especially in the newborn period. Data about the number of new cases of JEB in the U nited S tates were collected from the records of the D ystrophic E pidermolysis B ullosa R esearch Association of A merica (DebRA) n urse e ducator. Seventy‐one children with JEB were reported to have been born in the 5 years between 2007 and 2011, reflecting an incidence of at least 3.59 per million per year, significantly higher than previously estimated (2.04 per million). There was a high prevalence of morbidity and infant mortality of at least 73%, as 52 of the 71 cases proved fatal by June 2012. These data emphasize the need for future research to develop treatment and ultimately a cure for this disorder.