INTRODUCTION
Vitiligo can significantly impact the quality of life of affected individuals and their family members. Support groups provide numerous benefits, including allowing individuals to give and receive emotional and practical support.1,2 This prospective, international, cross-sectional study aimed to characterize the current landscape and needs of support groups. The authors designed an online survey with input from international support group leaders from the Global Vitiligo Foundation (GVF) and the Vitiligo International Patient Organizations Committee, which are largely recognized as major umbrella organizations for organized support groups globally. The English-language survey was distributed to 66 support group leaders from their respective networks. Sixteen group leaders responded from 6 countries: the United States, Canada, Uganda, Nigeria, Germany, and the Netherlands (Figure 1).
Among groups surveyed, founding years ranged from 1990 to 2024. Most groups met quarterly (37.5%) or monthly (25%) through virtual and in-person meetings (68.8%). Meeting places included community centers, restaurants, offices, business conference rooms, and cultural centers. Half the groups had official officers (50%), including the roles of president, secretary, treasurer, or executive board. The majority did not have dues or other membership requirements (68.8%). Nearly all the groups had a social media presence (93.8%), and 87.5% of group leaders reported social media as the most common route of member referral.
The most common age group was 35 to 54 years (mean 39%). Among US-based groups, the average racial/ethnic makeup was 51.9% Black, 34.2% White, 10% Mixed race, 8.3% Hispanic or Latino, 6.7% Other, and 5% Asian. Race/ethnicity data were restricted to US-based groups due to legal restrictions on demographic data collection in Europe. Women comprised over half of most groups, averaging 63.5%. Individuals with darker skin may experience increased disease visibility, contributing to greater psychosocial burden and reduced quality of life.3,4 Additionally, women with vitiligo have been shown to experience greater impact on quality of life.5
The most popular topics covered were vitiligo treatments, living with vitiligo, mental health, and sun protection. Nearly half of groups hosted events targeted at individuals outside the vitiligo community (43.8%), and half had events for parents of affected children (50%). The most common group goals included providing emotional support, spreading awareness, and sharing practical information.
While less than half of the groups were affiliated with an academic center or hospital (43.8%), most had medical professionals attend meetings (62.5%), of whom 70% were dermatologists, and of that group, 70% served in an official role.
