MEDIA RELEASE: America’s vitiligans are readying themselves for a mass rally in Washington D.C. on June 25th.
Vitiligans are members of the vitiligo community – people who suffer from an incurable skin disease called vitiligo – and are gathering in their thousands to demand action from government. Members of non-profits the Vitiligo Research Foundation, VITFriends and many other organizations will march to the steps of the Capitol in a bid for greater recognition and support.
The rally is part of World Vitiligo Day (WVD) – a global day of celebration and action that takes place annually on June 25th in support of the estimated 100 million vitiligo sufferers worldwide.
Vitiligo is an under-investigated, non-communicable, autoimmune skin disease that affects one in every hundred people to some degree. Vitiligo causes the skin to lighten in patches across the face and body. It can strike anyone, at any age. The burden of vitiligo falls particularly hard on developing countries, due to misdiagnosis, little or no access to effective treatments, and widespread stigmatization and discrimination.
World Vitiligo Day is now bringing this ‘forgotten’ disease into the public eye. Recognition is growing, particularly since vitiligan Winnie Harlow competed on America’s Next Top Model in 2014, then appearing in campaigns for Sprite, Diesel and Desigual.
The cosmetics industry is also recognizing the needs of the vitiligo community, with US company Zanderm launching the world’s first concealer made specifically for people with vitiligo. Dermablend, another cosmetics brand, is also offering vitiligo products.
However, there is still much work to do and WVD aims to persuade major organizations such as the UN and WHO to give vitiligo the attention it deserves and instill change in the healthcare policies of member states. Organizers are also looking to the big pharmaceutical companies to introduce products that satisfy the growing demand for effective treatments.
Support for the event is huge, with nearly a million people signing a petition asking the UN Secretary General to officially designate June 25th as World Vitiligo Day. “World Vitiligo Day is a vital event that gets bigger, better and more influential every year,” say Yan Valle, CEO of the Vitiligo Research Foundation. “We want June 25th to act as a beacon for vitiligans everywhere. It’s time healthcare policy and practice changed to help fight prejudice and ignorance and improve life for the millions of people across the globe who suffer from this underreported and misrepresented disease. Our voice must be heard.”
Campaign website: www.25June.org
CEO, Vitiligo Research Foundation
Notes for editors
About the Vitiligo Research Foundation:
The Vitiligo Research Foundation is a 501(c)3 non-profit, disease-specific foundation. As the nation's only organization addressing every phase of vitiligo treatment development, the VRF continuously works with a diverse group of support organizations and individuals to achieve significant measurable and fast results. When it comes to finding a cure for vitiligo, the VRF firmly expects to make a real difference in our lifetime.
Pronounced vit-ill-EYE-go, this is is a very complex and generally unpredictable skin disease. It is characterized by a sudden loss of melanin in the skin, which turns it milky white in irregular patches and expands over the lifetime. Complete knowledge of its etiology has been elusive, despite decades of intense research. However, the current thinking is that vitiligo represents a group of different immune-mediated disorders with a similar outcome: the appearance of white patches on the skin.
Vitiligo is a non-lethal and causes no organic harm, but can have a devastating effect on the affected person and their family. The reported prevalence of vitiligo is between 0.5% to 2% of the world population on average, but local numbers may vary greatly - depending on region and age group. The total number of people suffering from vitiligo is estimated at around 100 million people worldwide. However, the actual number may be much higher because vitiligo is a very underreported disease. It can be treated temporarily, with varying degrees of success, but there is no cure. It can strike anyone at any age, but the condition normally develops before twenty - meaning many children are living with vitiligo.
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