Support Groups for Children and Their Families in Pediatric Dermatology

Abstract

Recent discussions regarding the burden of skin disease and patient-centered medicine highlight the profound effects skin disease can have on individuals, their families, and society as a whole. Local support groups, often connected to national patient advocacy groups, can be an invaluable resource for patients, and offer physicians the opportunity to learn more about patients' disease experiences while providing adjunctive therapy for conditions such as alopecia areata and vitiligo, for which medical options are often limited. We created a support group for children with alopecia areata and their parents as a model for other diseases such as vitiligo and epidermolysis bullosa. Herein we outline the steps involved in establishing a support group, including the many resources available for patient support, steps in the recruitment of patients, topics for discussion and goals for the group, and the logistics of running a meeting. Creating this family support group was a relatively straightforward and rewarding experience for us, and we hope that other pediatric dermatologists can utilize this model for their patients.