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Importance of and instruction for starting a vitiligo patient support group

Abstract

Starting and maintaining a vitiligo support group can appear to be a daunting task. However, with proper planning and organization, the process can become manageable and rewarding. Our guide details the reasons to start a vitiligo support group, how to start a group, how to run a group, and how to promote a group. Legal protections and details regarding retention and funding are also discussed. The authors have extensive experience leading and/or assisting support groups for vitiligo and other disease states and we also sought out other current vitiligo support leaders for their valuable insights. Previous research has found that support groups for various medical conditions may have a protective effect and membership can build resilience among participants as well as foster a sense of hope regarding their disease. Further, groups can provide a network for those living with vitiligo to connect with, uplift, and learn from one another. These groups provide the opportunity to initiate lifelong connections with those facing similar circumstances and provide members with new insight and coping strategies. Members can share perspectives with one another and empower one another. We encourage dermatologists to provide vitiligo patients with support group information and to consider being involved in, starting, or otherwise supporting them.

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