Vitiligo is a disease that can drastically affect the lives of people who struggle with it. Many people suffering with vitiligo often feel helpless or overwhelmed in social situations. That’s because vitiligo, which manifests itself in white skin patches, can cover large areas of the body and make even ordinary tasks seem daunting or embarrassing.
Fortunately, there are a range of resources at the disposal of vitiligo patients. New treatments are being researched, and there are many organizations offering support and guidance to people who suffer from vitiligo. This article will cover some of these vitiligo patient organizations in the United States and detail just what they are doing to support those who struggle with this disease.
Vitiligo Research Foundation
vrfoundation.org
Headed by Executive Director Yan Valle, who has written much literature on the subject of vitiligo, the Vitiligo Research Foundation supports a wide range of vitiligo research. They support lab-based science, clinical trials, and they believe very much in the value of collaboration. In fact, they make sure their research data and bio samples are made freely available to academic researchers. They also offer master classes for those seeking to learn about the latest treatment techniques and discover knowledge from doctors, researchers, and Vitiligo Research executives.
The Foundation was started by Dmitry Aksenov in 2010. His daughter was diagnosed with vitiligo at an early age, and he wanted to do so mething about it. He realized that vitiligo was not getting the research or publicity necessary to make meaningful progress, so he started the Vitiligo Research Foundation. The nonprofit organization works with top specialists in the field, to unlock the secrets to the most effective treatments for vitiligo.
Vitiligo Support International
vitiligosupport.org
Founded in the year 2000, Vitiligo Support International is a patient-driven organization that offers support to those suffering from vitiligo via education and community outreach. Randy Salter, a vitiligo patient who had found success treating his own vitiligo, wanted to spread his message of success to the vitiligo community. With the dawn of the internet, he saw the need for a website dedicated to vitiligo, to provide a place for patients to communicate and organize. In 2003, he met Jackie Gardner, who had experience in public relations. With her guidance, the organization went from an online community to real-world activism, lobbying in Washington, D.C. and spreading awareness through medical conferences and clinical trials. Vitiligo Support International now boasts over 50,000 members, and they continue their mission to improve the lives of people suffering from vitiligo.
American Vitiligo Research Foundation
avrf.org
In 1995, the American Vitiligo Research Foundation began in Stillwater, Florida by Stella Pavlides. The foundation continues to be run from the home of its founder, and they focus on awareness and community outreach. One of the main ways the American Vitiligo Research Foundation promotes vitiligo awareness is by preaching diversity. They aim to foster an environment of acceptance for people suffering from vitiligo, who all too often are shunned by society for the appearance of their skin. Diversity is a concept with which many people are familiar, so by framing vitiligo in this context, the foundation is hoping to destigmatize the disease and make life easier for those who suffer from it.
Even as awareness of vitiligo grows, and organizations like these do their part to improve the lives of patients, continued research and outreach is necessary. This disease is more widespread than many people realize, and those who suffer from it often struggle in their daily lives. To get involved with a vitiligo organization in your area, a quick search of the web can reveal many such groups that are more than happy to help. Hopefully, these groups and countless others will continue their efforts to combat a disease that affects the lives of so many.
Disclaimer: The information on this blog is intended for orientation purposes only. For medical treatment options please consult your dermatologist.