国家大疱性表皮松解症注册中心的数据显示,遗传性大疱性表皮松解症在美国的发生率和患病率分别为大约 19/100 万出生婴儿和 8/100 万人口。[4]Fine JD, Johnson LB, Suchindran C, et al. The epidemiology of inherited EB: findings within American, Canadian, and European study populations. In: Fine JD, Bauer EA, McGuire J, et al, eds. Epidermolysis bullosa: clinical, epidemiologic, and laboratory advances, and the findings of the National Epidermolysis Bullosa Registry. Baltimore, MD: Johns Hopkins University Press; 1999:101-113.[5]Pfendner E, Uitto J, Fine JD. Epidermolysis bullosa carrier frequencies in the US population. J Invest Dermatol. 2001;116:483-484.http://www.ncbi.nlm.nih.gov/pubmed/11231335?tool=bestpractice.com 世界其他地区的发生率和患病率也接近这一数据,这表明全球并没有显著的差别。任何大疱性表皮松解症类型或亚型无性别或种族偏好。大约2/3的大疱性表皮松解症患者为单纯型大疱性表皮松解症患者。在这些患者中,大约 2/3 为仅累及掌跖。