How to Find Support in the Vitiligo Community
Published November 2019; Updated December 2024
When I was first diagnosed with vitiligo as a child, it was long before Winnie Harlow graced the cover of magazines and Barbie released its first doll with vitiligo. It was rare to meet another person with vitiligo. The few times I did, the acknowledgment of a shared condition, if any, was fleeting. And despite the love and support of my family and friends, I often felt like no one truly understood what I was going through. Living as part of the 1% of the world’s population with vitiligo was lonely.
That all changed when I began connecting with the vitiligo community. It started with a phone call to another girl my age with the condition, followed by more introductions and attending that year’s World Vitiligo Day conference. Today, I am immersed in this community and credit this close-knit group of patients, dermatologists, and advocates for my personal growth in confidence and hope for the future.
If you feel alone in living with vitiligo and are seeking support, I invite you to reach out to this thriving community. In the past decade, there has been an explosion of support for vitiligo in the form of non-profits, support groups, social media pages, and more. Today there are numerous organizations, communities, and events for those with vitiligo and their families to connect, learn, and get support. Connecting with the vitiligo community can not only offer education and resources for navigating the condition as an autoimmune disease, but it also provides emotional and social outlets for grieving, processing, and finding a path forward.
Here are ways you can find support in the vitiligo community.
Connect with a vitiligo organization
Vitiligo organizations are at the forefront of vitiligo advocacy, research, and education. These organizations provide a wealth of community support, educational resources to help you understand the condition, and access to the latest research on vitiligo. They often host support groups, webinars, and events where you can connect with others who share similar experiences, fostering a sense of community and belonging. By engaging with these organizations, you gain not only knowledge but also a network of people dedicated to supporting and uplifting you.
Recommended resources:
- The Global Vitiligo Foundation, an international nonprofit creating unity for vitiligo
- Vitiligo Research Foundation, a nonprofit focused on research and treatments
- Vitiligo Society, a UK charity providing education and support for people with vitiligo
- Vitiligo Support International, a non-profit patient advocacy organization
- The American Vitiligo Research Foundation promotes education and community support
Connect on social media
Social media is a free and easy way to connect with the vitiligo community. As digital, public platforms, social media offers the opportunity to passively browse or be an active participant in conversations. The vitiligo community is present across all of the major social media platforms. On Facebook, you’ll find thriving Facebook groups where members share their stories and crowdsource information. On Instagram and TikTok, you’ll find influencers with vitiligo sharing their personal stories in addition to thriving vitiligo advocacy pages.
Recommended resources:
- Vitiligo Life Facebook group, one of the biggest organic social groups with 25k members
- The r/Vitiligo subreddit (where to ask all of your questions)
- #vitiligo on Instagram with more than 813k posts
- The world’s first AI Guide on Vitiligo
- Watch the latest #vitiligo videos on Tiktok (97k posts!)
- Follow Living Dappled on Instagram
Join a virtual membership network
Membership networks are digital communities that provide exclusive access to a host of benefits and perks. Living Dappled’s membership network, the Dappled Darlings Community, provides members with a private Facebook group with exclusive virtual discussions for a small monthly fee. MyVitiligoTeam is a free membership that provides access to a digital networking space for those with vitiligo. Learn more about these networks below.
Recommended resources:
- Dappled Darlings Community, a private online membership network by Living Dappled
- MyVitiligoTeam, an online support network for vitiligo
Explore programs for kids and teens
The vitiligo community has a big heart for children with vitiligo—and the growing number of resources for this specific audience shows it. As someone who was diagnosed at the age of seven, it warms my heart to see so much support for these little ones. From pen pal programs and children’s summer camps to virtual workshop and meetups for teens, there are a number of programs geared towards youth with vitiligo. (And yes, they often include parents and families too.)
Recommended resources:
- Purple Patch Teens, a support community for teens with vitiligo
- Pen Pal Patch program to match with your bestie with vitiligo
- Camp Victory overnight conference for kids with vitiligo
- Super Litty Kids Committee, a Facebook group
- Melanin Mosaic, a non-profit dedicated to teens with vitiligo
Follow vitiligo blogs
Vitiligo discussion forums and blogs provide a source of community through education. These platforms often cover the latest medical and health education for vitiligo in addition to patient stories, expert interviews, and lifestyle strategies for those with vitiligo. On some platforms, readers are not only encouraged to consume the information but also share their own stories and experiences. Additionally, you can typically access free or paid subscriptions to get the latest updates delivered straight to your inbox.
Recommended resources:
- Living Dappled, a blog for women with vitiligo
- VitLife, a subscription-based blog by the Vitiligo Society
- Speaking of Vitiligo, a blog by Dr. John Harris, a leading dermatologist and expert in vitiligo
- Unite for Vitiligo, a vitiligo news outlet
- MyVitiligoTeam, an online support network with a robust resources section
Join a support group
Although a virtual connection to the vitiligo community is impactful, there is a special kind of solidarity that is created through in-person support groups and events. Support networks like VitFriends, Litty Ligo, Vstrong, Beautifully Unblemished, and the Vitiligo Society regularly host support group meetings, social gatherings, and fundraising events. These events are an opportunity to meet others living with vitiligo, share your experience, and learn more about the condition.
Recommended resources:
- VitFriends, a national US support group
- VStrong, a support group based in Detroit
- Litty Ligo, a support group focused on the black and brown experience of vitiligo
- Beautifully Unblemished, a Florida-based support group with a robust events calendar
- Vitiligo Society, a UK charity providing education and support for people with vitiligo
Attend virtual and in-person events
You can also find the vitiligo community through local and virtual events. Each year, World Vitiligo Day is celebrated with a global and U.S. conference, which now includes a camp for children with vitiligo. Additionally, support groups host local and virtual events throughout the year including walkathons, workshops, and more. These events often seek to connect those living with vitiligo and their families with inspiring speakers, experts in dermatology and psychology, and others with the condition.
Recommended resources:
- World Vitiligo Day USA, the annual U.S. conference hosted around June 25th each year
- Camp Victory, an overnight conference for kids with vitiligo
- Living Dappled’s community events calendar
