Epidermolysis Bullosa Care in the United States

There is a wide range of health care delivery systems within the United States for patients with epidermolysis bullosa (EB). They range from nonexistent, primarily because of remote geographic locations, to 4 comprehensive interdisciplinary EB centers. Table 1 lists the 5 large interdisciplinary centers, clinic directors, and the services available either as part of the care team or via consultation. In addition to these 5 centers, the University of Miami has an EB program, directed by Lisa Connelly, MD, which can provide care and resources to individuals with EB.

Table 1

EB centers in the United States and the subspecialties available either as part of the care team or through consultation

Name of Institutions	Lucile Packard Children’s Hospital at Stanford	The Children’s Hospital, Aurora, CO	Cincinnati Children’s Hospital	Columbia University, New York
Director, Interdisciplinary Center	Anna Bruckner, MD	H. Alan Arbuckle, MD	Anne Lucky, MD	Kim Morel, MD
Subspecialties at Centers
Dermatology	Y	Y	Y	Y
EB Nurse Specialist	Y	Y	Y	Y
Gastroenterology/Nutrition	Y	Y	Y	Y
Pediatric Surgery	^a	^a	Y	Y
Pain Management	Y	Y	Y	Y
Occupational Therapy	Y	Y	Y	Y
Physical Therapy	Y	Y	Y	Y
Genetics	Y	Y	^a	Y
Infectious Disease	^a	^a	^a	Y
Social Work	Y	Y	Y	Y
Psychology/Psychiatry	Y	^a	Y	^a
Child Life	^a	Y	Y	Y
Dental	^b	Y	Y	Y
Hematology	Y	^a	^a	Y
Cardiology	^a	^a	^a	^a
Oncology	^a	^a	^a	^a
Ophthalmology	Y	^a	^a	^a
Nephrology	^a	^a	^a	^a
Orthopedics	^a	^a	^a	^a
Interventional Radiology	^a	^a	^a	^a
Endocrinology	^a	^a	^a	^a