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To the Editor.—
I was extremely encouraged to read the excellent editorial in the September 1981 Archives (117:529-530) entitled "Therapeutic Considerations in Recessive Dystrophic Epidermolysis Bullosa." As Drs Bauer and Cooper painfully pointed out, because "there is essentially no epidemiologic information on the incidence and prevalence of the various forms of the disease," therapeutic trials in rare diseases are hindered by the fact that they must be performed on a multicenter basis.Since October 1979, the Dystrophic Epidermolysis Bullosa Research Association of America, Inc, has been offering direct support services, educational information, and advocacy services to patients, families, physicians, nurses, schools, and institutions seeking information, referral, and assistance on the subject of epidermolysis bullosa. Although the prevalence of epidermolysis bullosa in the United States is not precisely known, our organization has currently identified almost 1,500 patients who are afflicted with this disorder throughout the United States and Canada.We are
Pessar A. Epidermolysis Bullosa. Arch Dermatol. 1982;118(6):371. doi:10.1001/archderm.1982.01650180005004