If you’re like me, you have trouble keeping up with all of the various vitiligo support organizations and what exactly they do. But all you have to remember about the Global Vitiligo Support Community (GVSC) is one word – collaboration.
Created as part of the Global Vitiligo Foundation (previously named the Vitiligo Working Group), the GVSC is the patient support committee within the foundation. The team works to increase collaboration among vitiligo support groups around the world to bring unity to their efforts.
“There’s a growing spirit of collaboration, particularly within the vitiligo support community,” said Dr. Richard Huggins, chairperson and dermatologist at Henry Ford Hospital in Detroit, Michigan. “Support groups are working together to have a bigger impact.”
Here are three ways the GVSC is centered on the idea of “collaboration:”
The GVSC was created in increase collaboration between support groups around the world
The GVSC was created in 2016 with the purpose of enhancing collaboration among vitiligo support groups. With international representation, its six-member leadership team includes vitiligo support leaders from Africa, France and the United States.
“There was a need for more unity,” said Dr. Huggins. “Groups were inventing the wheel over again instead of learning from one another and sharing resources. The GVSC provides a vehicle for bringing groups together to learn and share from one another.”
The GVSC hosts regular teleconferences to facilitate collaboration between support groups
The GVSC hosts four open teleconferences a year to develop relationships and share updates among vitiligo support groups. All vitiligo support group leaders are invited to join and share updates on what they’re doing and things that might be mutually beneficial to other groups. This January, the GVSC hosted a call in which they discussed international advocacy efforts, coordinated celebrations of World Vitiligo Day 2017 and discussed plans to collaborate to raise money for vitiligo research.
The GVSC is collaborating with support groups to create a library of best practice materials
Looking to increase the opportunity to share best practices, the GVSC has created an online library in Google Drive of materials that includes a support group directory, meeting updates, resources for children and a list of books about vitiligo. Currently, the GVSC is working on a template for how to start a support group including best practices for running meetings, keys to success and how to recruit members. You can view the Google Drive by visiting the GVSC’s webpage at https://globalvitiligofoundation.org/about-us/committees/.
You can support the GVSC by making sure your vitiligo support group has an active representative at their teleconference calls. For more information, or to get your support group involved in the GVSC, contact the group at firstname.lastname@example.org or 313-228-2186.
Erika Page is the Founder and Editor of Living Dappled. After getting vitiligo at the age of seven, she lost 100% of her pigment to the condition and today lives with universal vitiligo.