Could you have imagined that a small gathering aimed to uplift spirits in a Nigerian shopping mall would expand into a global initiative within just a decade? World Vitiligo Day (WVD), observed every 25th of June, has done just that. It's a shining example of how community and shared purpose can fuel powerful transformation. Now, it's a global call to action, advocating for the needs of a hundred million vitiligo sufferers worldwide.

THE GENESIS

Our tale begins in 2009 - a time haunted by the remnants of an economic recession, the advent of Bitcoin, and audiences gaping at the fantastical world of 'Avatar'. Beneath these global milestones, the seeds of the vitiligo awareness movement were quietly being sown.

The prologue to World Vitiligo Day was penned in India. Dr. Savita Malhotra of the Post Graduate Institute of Medical Education and Research (PGIMER) in Chandigarh, initiated the first national "Vitiligo Day". This was celebrated annually on May 19th until 2015 when tireless Prof. Davinder Parsad unified the Indian vitiligo community with the global observance on June 25th.

At the same time, Steve Hargadon of Vitiligo Friends and Valarie Molyneaux of VITFriends, working independently, were advocating for a similar day of observance in the USA, but their voices echoed in the void. Then, a beacon of hope emerged: Ogo Maduewesi, founder and President of the Vitiligo Support and Awareness Foundation (VITSAF) in Lagos, Nigeria. Ogo organized the ‘Purple Fun Day’ on June 25, 2011, commemorating Michael Jackson and his battle with vitiligo. This initiative aimed to illuminate the truth about vitiligo, debunking myths such as it being a "divine curse". Although the online petition launched by Ogo garnered a mere 111 signatures in six months an no support from other vitiligo groups, Ogo's vision sowed the seeds for a blossoming global movement.

GATHERING MOMENTUM

This seed may have laid dormant, had it not been for Yan Valle, CEO of the Vitiligo Research Foundation (VRF) based in New York. He understood that even with multi-million dollar investments from it's founder Dmitry Aksenov, a single nonprofit might not quickly, or ever, solve the challenges posed by vitiligo. This disease, one of many ‘overlooked’ conditions, failed to capture the pharmaceutical industry or academic community's attention. Valle envisioned a unifying symbol to draw young scientists into the uncharted territory of dermatology—a field devoid of prompt acclaim and substantial rewards, with limited career advancement opportunities. Seeing promise in Ogo's effort, Yan forged a new campaign, World Vitiligo Day. 

June 25th, 2012 marked the birth of World Vitiligo Day, unveiled at a press conference in Rome hosted by Prof. Torello Lotti and Valle. Despite a city-wide transport strike threatening attendance, the message took wing. Pre-arranged events in countries across the globe far exceeded initial expectations, proving that seemingly small actions could birth a tidal wave of awareness and acceptance.

THE GLOBAL ARENA

World Vitiligo Day then embarked on a global journey, with each year shining a spotlight on a new country serving as the campaign's HQ:

• 2024: 🇨🇴 Cali, Colombia  
• 2023: 🇰🇿 Almaty, Kazakhstan 
• 2022: 🇲🇽 Mexico City, Mexico 
• 2021: 🇮🇩 Jakarta, Indonesia 
• 2020: 🇷🇸 Zagreb, Serbia 
• 2019: 🇻🇳 Hanoi, Vietnam 
• 2018: 🇺🇸 Boston, USA 
• 2017: 🇧🇷 Sao Paulo, Brazil 
• 2016: 🇨🇿 Prague, the Czech Republic 
• 2015: 🇨🇳 Shenyang, China 
• 2014: 🇮🇳 Chandigarh, India 
• 2013: 🇺🇸 Detroit, USA 
• 2012: 🇮🇹 Rome, Italy 

Against all odds, WVD quickly emerged as a potent force in global health advocacy, eclipsing similar events like World Psoriasis Day or World Melanoma Day, according to the ever-watchful Google Trends. With the WVD Presidential Committee and VRF at the helm, local vitiligo support groups stage myriad events, while clinics and volunteer doctors offer free skin screenings, consultations, and public education.

While there's no universal playbook for creating a "world day", the VRF set an ambitious goal to collect at least 500,000 signatures for a petition to gain official recognition from the United Nations (UN). Such recognition was seen as a way to spotlight vitiligo on the global stage, encouraging governments to utilize UN and World Health Organization (WHO) resources to boost research in this area. 

In the first three years of the campaign, the UN petition signatures multiplied exponentially, breaching the half-a-million threshold in 2015. In 2016, the UN marked World Vitiligo Day as an observance in its International Calendar of Events. However, it was removed in 2019 when the calendar was streamlined to 'Major Events'. Understandably, with the subsequent COVID-19 lockdowns and ongoing global unrest, our appeal has been placed on pause by the officials. Despite this, World Vitiligo Day has surpassed our initial ambitions, influencing public sentiment more effectively than any formal pronouncement could achieve.

OUT OF THE SHADOWS

A primary, albeit unspoken, goal of the campaign was to stoke interest in vitiligo within the 'Big Pharma' universe, stimulating drug development for this formerly ‘forgotten disease.' From a meager single company engaged in vitiligo drug development in 2010, the number today stands proudly at over forty. In July 2022, the FDA gave the green light to the first drug aimed at facial vitiligo, followed by the EMA in April 2023, signaling hope for future drug approvals.

Ultimately, WVD celebrations ascended to the upper echelons of societal and media establishments. WVD-2022 was kickstarted at the Senate of Mexico, while governors and mayors across 18 U.S. States declared June 'Vitiligo Awareness Month'. Media coverage has surged, with a host of platforms - from TV channels to radio stations, newspapers, and influential internet personalities - amplifying the WVD message.

 

This is just a quick overview of the chaotic yet incredible and inspiring international journey of World Vitiligo Day. While the full history, including detailed accounts of national events, has yet to be written, this brief synopsis highlights the power of collective action and the resilience of the human spirit. We owe a tremendous Thank You to support organizations such as VITSAF, VITFriends, VIPOC, the Vitiligo Society, and SHWETA, all of whom have played crucial roles in expanding WVD's influence and impacting policies of insurance companies and entire states. We also owe immense gratitude to the countless unsung heroes who have ensured that vitiligo is recognized and managed more effectively worldwide.

Sincerely,

WVD Presidential Committee

 

Purple Fun Day was held at the Silverbird shopping mall in Lagos, Nigeria on June 25, 2011.

Inaugural press-conference was held by Prof. Lotti and Valle at Aula Magna of Guglielmo Marconi University on June 22, 2012. 

A massive rally at the US Capitol Hill was organized by VITFriends team in June 2016, later mirrored at Massachussetes State House.

The first WVD event to receive government recognition and support took place in Hanoi, Vietnam, in 2019.

WVD-2022 Kickstarted at the Senate of Mexico, presenting Vitiligo Patient Journey Map.

 

The World Vitiligo Day Presidential Committee:

• Dr. Aliya Kassumkhanova, MD, Founder of Vitiligo Patient School (2023)
• Prof. Jorge Ocampo Candiani, MD, Chair of the Dermatology Department at Hospital Universitario De Nuevo Leon (2022)
• Dr. Srie Prihian Gondokaryono, MD, PhD, Head - Indonesian Pediatric Dermatology Study Group (2021)
• Prof. Ivana Binić, MD, Director of Clinic of Dermatology and Venerology in Niš, Serbia (2020)
• Prof. Nguyen Van Thuong, MD, Director of Vietnam National Hospital of Dermatology and Venereology, Vietnam (2019)
• Prof. Paulo Cunha, MD, Chairman of the Department of Dermatology in Jundiaí Medical School, Brazil (2017)
• Prof. Jana Hercogova, MD, Chairwoman Department of Dermatology Bulowka Hospital, Czech Republic (2016)
• Prof. Xing-Hua Gao, MD, Chairman of the Dermatology Department at the No. 1 Hospital of China Medical University, China (2015)
• Prof. Davinder Parsad, MD, Professor at Department of Dermatology PGIMER, India (2014)
• Prof. Henri Lim, MD, Chairman Department of Dermatology, Henry Ford Hospital, President American Academy of Dermatology, USA (2013)
• Prof. Torello Lotti, MD, Chairman Department of Dermatology, University G. Marconi of Rome, Italy (2012), Chair of WVD Presidential Committee
• Ogo Maduewesi, CEO and President of VITSAF, Nigeria - Vitiligo Awareness Day (2011), co-Founder World Vitiligo Day campaign
• Yan Valle, CEO Vitiligo Research Foundation (USA), co-Founder and General Manager of the World Vitiligo Day campaign.

Photo: World Vitiligo Day 2020 Org Committee meeting in Madrid

More

For more information about World Vitiligo Day, check out a chache of WVD reports, photos and videos

To register as a volunteer and get the latest updates, please visit 25June.org

Read it in Spanish, thanks to Prof. Jorge Luis Perez: Día Mundial del Vitíligo: una breve historia

Dig deeper:

1. Kluger N. The Michael Jackson and Winnie Harlow effect: impact on vitiligo awareness on the internet. J Clin Aesthet Dermatol. 2019 Sep;12(9):12-13. Epub 2019 Sep 1. PMID: 31641411; PMCID: PMC6777701
2. Valle Y. World Vitiligo Day-A grassroots campaign to improve the quality of life of vitiligo patients. Dermatol Ther. 2019 Sep;32(5):e13050. doi: 10.1111/dth.13050. Epub 2019 Aug 22. PMID: 31369192.
3. Valle Y, Van Thuong N, Tirant M, Lomonosov K, Lotti T, Vojvodic A. How the globe celebrated World Vitiligo Day 2019. Dermatol Ther. 2019 Nov;32(6):e13085. doi: 10.1111/dth.13085. Epub 2019 Oct 9. PMID: 31505098.
4. Whitsitt J, Karimkhani C, Boyers LN, Lott JP, Dellavalle RP. Comparing burden of dermatologic disease to search interest on Google Trends. Dermatol Online J. 2015 Jan 15;21(1):13030/qt5xg811qp. PMID: 25612125.