The beautiful landscape of Kazakhstan recently witnessed the incredible success of World Vitiligo Day 2023. From June 23rd to June 26th, this special event, led by Dr. Aliya Kassymkhanova and Dr. Anar Abdrakhmanova, brought together people who care deeply about vitiligo.

 In six cities across Kazakhstan - Almaty, Astana, Kyzul-orda, Semei, Shymkent, and Uralsk - participants took part in a variety of exciting activities. They watched live demonstrations of microsurgery procedures at the Vitiligo & Skin Health clinic, which were recorded so that others can learn from them. The scientific session, attended by over 200 dermatologists in Almaty alone and hundreds of online viewers, shed light on the complexities of vitiligo management. In Shymkent, there was a roundtable at the dermatovenerological hospital, which hosts a  Vitiligo School that helps patients and their loved ones feel supported and connected.

This event was not just local - it was global! People from all over the world who are dedicated to improving the lives of those with vitiligo joined together. The success of World Vitiligo Day 2023 was built not only in Kazakhstan but also in countries like China, the European Union, Mexico, the United Kingdom, and the United States. It shows that we are all united in our commitment to spreading awareness and creating a caring global community for people with vitiligo.

As we look ahead to World Vitiligo Day 2024, we want to express our sincere gratitude to everyone who made the 2023 event so special. Stay tuned for more exciting updates as we continue to make a positive impact in the lives of those affected by vitiligo. Together, we can create a future where understanding, acceptance, and empowerment are the norm.

Continue reading: Report and Photos

#WVD2023 #TogetherAgainstVitiligo

The World Vitiligo Day 2023 event held in Kazakhstan has been an extraordinary triumph, surpassing all expectations and leaving an indelible impact on the vitiligo community. Over the course of three days, we rallied across six vibrant cities in the heart of Central Asia: Almaty, Astana, Kyzulorda, Shymkent, Semei and Uralsk. The energy and enthusiasm displayed by all participants were truly awe-inspiring.

We must recognize and celebrate the unsung heroes who made this remarkable achievement possible - the activists and volunteers whose unwavering dedication and tireless efforts lit the path to success. Your passion and commitment have shone brightly, and we extend our deepest appreciation to each and every one of you.

At the helm of the WVD 2023 organizational committee, we were privileged to have the esteemed leadership of Honorary President Dr. Aliya Kassumkhanova and Vice-President Dr. Anar Abdrakhmanova. They were supported by a dedicated team of individuals who worked tirelessly behind the scenes:

• Dr. Zhangarasheva Gulnara Kasenovna (Жангарашева Гульнара Касеновна)

• Dr. Ospanova Saniya Almeshevna (Оспанова Сания Альмешевна)

• Dr. Sukhanberdieva Zarina Maratovna (Суханбердиева Зарина Маратовна)

• Zheptisaev Aidar (Жетписпаев Айдар)

We must recognize the profound influence of those who sparked the initial flame that ignited our movement. Ogo Maduewesi and Yan Valle have played pivotal roles, their passion and creativity infusing life into our cause. Their unwavering commitment has been a driving force behind our success.Guiding us throughout this incredible journey was the remarkable Prof. Torello Lotti, a true beacon of wisdom and inspiration. It is with great pride that we celebrate his recent appointment as an Academician of the Italian Republic, a testament to his undeniable contributions to the field of dermatology.

Special recognition must be given to the leaders of national or regional support groups who organized the WVD2023 events in their respective countries. Their seamless organization and unwavering commitment ensured the success of this global movement. Individuals like James Laban from Vitiligo Society Kenya, Natalie Ambersley from Vitiligo Society UK, Gaone Matewa from VIPOC, Valarie Molyneaux from VITFriends, Slobodanka Mijatovi from Serbia, and Vivian Najjuka from Vitiligo Association of Uganda have played a vital role in uniting our community.

We cannot forget the incomparable contribution of Prof. Xing-Hua Gao, who orchestrated a powerful online WVD-2015 event in China, drawing a record-breaking participation of nearly 1.5 million individuals. Prof. Gao's continued efforts, including organizing the 'Together Against Vitiligo You and I Together' event at the Dermatology Department of the First Affiliated Hospital of China Medical University, have made a lasting impact on vitiligo patients and their mental health.

Our deepest gratitude goes to the Aksenov family, whose unwavering support and belief in our cause have been instrumental in our achievements. We also extend heartfelt thanks to our Platinum Sponsor, INCYTE, for their invaluable support, especially during these challenging and unpredictable times.

Today, we stand united as a testament to the indomitable spirit and resilience of the vitiligo community.

In the colorful world of fashion, two radiant models from Almaty, Kazakhstan are weaving their unique patterns. Welcome Liliya Mamieva and Ailyn Alieva, the shining faces of the World Vitiligo Day 2023 campaign.

Liliya, a 38-year-old force of nature, is redefining what it means to be beautiful. Taking inspiration from the amazing Winnie Harlow, a ground-breaking supermodel living with vitiligo, Liliya started her journey modestly on Instagram. Little did she know her followers would catapult her to fashion stardom.

Joining this ride is the vibrant 9-year-old, Ailyn Alieva. Full of hope and courage beyond her years, she is a testament to the fact that vitiligo is no hindrance to success.

Their stories echo those of other vitiligo warriors who have carved their niche in fashion - like Amy Deanna, the pioneering CoverGirl model with vitiligo, and Winnie Harlow, the world-renowned supermodel who is a champion for vitiligo acceptance.

Following their lead, Liliya and Ailyn are breaking the mould and reshaping beauty standards. They challenge the unrealistic and retouched images of perfection that dominate mainstream beauty ads, and call for a beauty narrative that embraces individuality, not alienates it. Their strength and poise serve as a reminder that beauty lies in embracing our authentic selves.

So, here's to a future where the fashion world doesn't just tolerate, but applauds and celebrates vitiligo!

FOR IMMEDIATE RELEASE

Title: Almaty, Kazakhstan Welcomes Global Community for World Vitiligo Day 2023: 'Vitiligo: Looking into the Future'

ALMATY, KAZAKHSTAN - June 19, 2023 - The Vitiligo Research Foundation (VRF) is excited to announce the hosting of World Vitiligo Day (WVD) 2023 in Almaty, Kazakhstan, the largest country in Central Asia. This year's theme, “Vitiligo: Looking into the Future,” places emphasis on advancing knowledge and treatment of this lifelong condition.

The event, scheduled to run from June 23rd through June 26th, offers a series of dynamic programs aimed at promoting informed treatment choices and encouraging patient involvement in their care. The honorary president of WVD-2023, Dr. Aliya Kassymkhanova, along with Vice-President Dr. Anar Abdrakhmanova and a team of committed activists, will lead these initiatives.

Kicking off on June 23rd with a Clinical Day in Almaty, attendees will witness a live, two-hour microsurgery demonstration on vitiligo treatment. This session, supervised and commented on by Prof. Torello Lotti, MD, a respected academician of the Italian Republic, serves as the inaugural event.

June 24th presents Scientific Day, featuring a vitiligo-centric half-day scientific and Q&A session held in Almaty. Parallel to this, eleven dermatovenerological clinics across Kazakhstan will host similar sessions, culminating with a networking event to encourage peer-to-peer education and collaboration.

WVD-2023 reaches its apex on June 25th with a Patient Day, held at Shymkent's Vitiligo School, focusing on children and their caregivers.

In conjunction, the Vitiligo International Patient Organisations Committee (VIPOC) orchestrates WVD events in Brussels, Belgium, uniting patient representatives from the EU, Asia, and Africa for a series of workshops, advocacy endeavors, and collaborative projects.

In the United States, the Global Vitiligo Foundation and its member organizations are set to host WVD events in Atlanta, GA, featuring scientific presentations and discussions on a wide range of topics, from recent discoveries to mental health. Emmy award winner Lee Thomas will serve as the keynote speaker, inspiring others through his personal vitiligo journey.

The VRF is proud to organize this year's WVD alongside esteemed local and international partners, such as the Health Ministry of Kazakhstan, and major sponsors like Aksenov family and Incyte, signifying a unified global commitment towards a future free from vitiligo.

World Vitiligo Day is an incredible chance to educate, create awareness, gather signatures, and support those impacted by this psychologically intense health condition. 

Our toolkit provides the information and tools needed to partake in this international initiative.

What You Need

Ensure you've got these from the organizers - either as templates or ready-to-print PDFs:

• Sample Media Release and/or Newsletter
• Sample Invitation to Journalists
• World Vitiligo Day Wall Posters
• UN Petition Leaflets
• Vitiligo Q&A
• Web Badges
• Links to Dedicated Websites, YouTube, and Facebook Pages

Planning and promoting an event can feel overwhelming, but we've got you covered with some helpful tips.

Planning Ahead

• Reach out to the VR Foundation or your local vitiligo support group a few months prior for up-to-date materials and info.
• Rope in local businesses, government agencies, healthcare organizations, opinion leaders, and media partners.
• Recruit volunteers, guest speakers, and community liaisons.
• Create or modify materials for distribution. Make sure you have them ready well in advance.
• Run a dress rehearsal a few days before June 25.

Spreading the Word

• Draft a media outreach strategy. Include local TV stations, radio, newspapers, and community calendars.
• Send out a Media Release on June 20-21.
• Post about the event on your website, social media pages, and ask your friends and partners to do the same.
• Put up posters around your town - at community centers, religious places, schools, clinics, stores, and more.
• Set up directional signs for the big day.

Make sure you've got enough petition leaflets.

• Set up tables and chairs, possibly at a local community center.
• Prepare a sign-in sheet for media attendees.
• Ask people to sign the petition leaflets.
• Don't forget the snacks!
• Collect the signed petitions and send them to the VR Foundation or fill out the form at 25June.org on behalf of each participant.

Following Up

• Check in with the reporters who attended.
• Monitor media coverage using tools like Google Alerts. If your budget allows, consider paid media tracking for a more comprehensive overview.
• Share any media coverage with your community partners and stakeholders. Post a summary on your website.
• Regardless of how big or successful your event is, remember that every effort counts in raising awareness about this often overlooked condition.

The official logo for World Vitiligo Day (WVD) 2023, to be held in Kazakhstan, has been unveiled. This logo was crafted by local artist Zhanar Sagidolla, who emerged as the winner in the logo design contest. The competition was overseen by the WVD 2023 organizational committee, led by Dr. Aliya Kassumkhanova.

The selected theme for the 2023 World Vitiligo Day is 'Vitiligo: Looking into the Future,' which reflects the event's forward-looking focus on vitiligo research, treatment, and understanding.

Mark your calendars and pack your sunscreen!

On June 25th, 2023, a brilliant beacon will shine on vitiligo as the thirteenth annual World Vitiligo Day (WVD) unfolds in Almaty, Kazakhstan. This vibrant global event unites researchers, doctors, and patients in a spirited effort to boost awareness and celebrate the remarkable diversity, tenacity, and strength of nearly 100 million vitiligo warriors worldwide.

Each year, WVD plants its flag in a new city, marking the start of the global campaign. Last year, Mexico's Senate played host, and now it's Almaty's turn to take center stage in 2023. With 'Vitiligo: Looking Into the Future' as the guiding theme, the Ministry of Health of Kazakhstan has officially proclaimed June as Vitiligo Awareness Month, igniting celebrations across 12 Kazakhstani cities and beyond, reaching Central Asia. At the helm of WVD-2023 is honorary president Dr. Aliya Kassymkhanova.

World Vitiligo Day sprang to life in 2011, fueled by the unwavering determination of non-profit organizations VR Foundation (USA) and VITSAF (Nigeria), and their steadfast supporters from around the globe. The Aksenov Family Foundation's generosity has been instrumental in catapulting WVD into an international powerhouse, spotlighting vitiligo and integrating it into the mainstream health discourse.

The progress has been nothing short of astounding. A mere 12 years ago, only two or three companies dared to venture intovitiligo drug development. Today, that number has skyrocketed to over 35, with several promising drugs on the horizon in the next 3-5 years, complemented by the first vitiligo drug officially registeredby the US FDA. A testament to WVD's triumph, nearly twenty U.S. state governors and countless city mayors have declared June as 'Vitiligo Awareness Month.'

WVD's global reach extends far and wide. Vitiligo Patient Leaders from across Europe will convenein Brussels, Belgium, from June 23-26, organized by the Vitiligo International Patient Organizations Committee (VIPOC). Meanwhile, on June 23rd, the US-based event in Atlanta, GA, spearheaded by VITFriends and the Global Vitiligo Foundation, promises to be a memorable gathering. Stay tuned for further details on events in other exciting locations.

To this date, WVD Presidential Committee and VRF coordinate the global effort, while national and local vitiligo support groups organize conferences, walks, picnics, parades, and other events. Also, clinics and volunteer doctors offer free skin screening programs, education and consultations to the public. With all this activity comes attention – and TV channels, radio stations, newspapers and internet influencers now cover WVD. The WVD Presidential Committee inlcudes:

Dr. Aliya Kassymkhanova (Kazakhstan, 2023)

Prof. Jorge Ocampo Candiani (Mexico, 2022)

Dr. Srie Prihian Gondokaryono (Indonesia, 2021)

Prof. Ivana Binić (Serbia, 2020)

Prof. Nguyen Van Thuong (Vietnam, 2019)

Prof. Paulo Cunha (Brazil, 2017)

Prof. Jana Hercogova (Czech Republic, 2016)

Prof. Xing-Hua Gao (China, 2015)

Prof. Davinder Parsad (India, 2014)

Prof. Henri Lim (USA, 2013)

Prof. Torello Lotti (Italy, 2012), Chair of WVD Presidential Committee

Ogo Maduewesi (Nigeria, 2011), co-Founder

Prof. Yan Valle (Canada), co-Founder, General Manager.

Celebrating its 12th year, the World Vitiligo Day (WVD) took center stage on June 25th in Mexico, under the banner 'Learning to live with Vitiligo'. The emphasis was not only on raising awareness but also on improving education for patients and medical professionals.

In the span of two days, the key promoters, Dr. Jorge Ocampo Candiani of the Autonomous University of Nuevo Leon and Dr. Rossana Llergo Valdez of the Mexican Foundation for Dermatology (FMD), spearheaded the activities. The successful event was a collaborative effort with several renowned institutions and was steered by leading dermatology professionals like Dr. Judith Domínguez Cherit, Dr. José Alberto Ramos Garibay, Dr. Abraham Alfaro García, and Dr. Karen Férez Blando.

The proceedings kicked off on June 22nd with a press conference at the Senate of the Republic's Federalism Courtyard. In her remarks, Senator Antares Vázquez Alatorre urged for improved patient care and public policies that bolster visibility and understanding of skin conditions. Echoing this sentiment, Dr. Rossana Llergo stressed the progress achieved in awareness campaigns, thanks to the consistent efforts of institutions such as the FMD.

Highlighting the importance of WVD, Dr. Ocampo Candiani noted the critical role it plays in educating patients about vitiligo, its impact on their quality of life, and the availability of capable specialists. Dr. Torello Lotti and Yan Valle, both from the Vitiligo Research Foundation, made insightful contributions, emphasizing education, patient awareness, and vitiligo's connection to other immune disorders.

Yan Valle spoke about the growing global prominence of WVD, marking it as a crucial event among Health Days. He also introduced the Patient Journey Map, aimed at providing physicians and patients with an overview of the disease and appropriate treatment options.

The main event, centered on the theme 'Learning to live with vitiligo', brought together the International Vitiligo Research Foundation, allied medical associations, and sponsors. They held an academic session featuring dermatologists from Mexico. Here, Dr. Torello Lotti discussed recent breakthroughs in vitiligo research and treatment. Valle presented the 'Living History of World Vitiligo Day' and the 'Map of the Vitiligo Patient's Journey', focusing on his experiences and the genesis of this significant date.

Support and information for patients marked the highlight of the 2022 WVD. A Patient Information Session was organized on June 25th at the Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán. The session involved a series of talks and workshops aimed at helping vitiligo patients better navigate their lives. Topics included vitiligo's role in childhood, sexuality, the workplace, and even an aesthetic workshop on self-makeup. The session concluded with a photographic exhibition titled 'Vitiligo: a colorful skin', celebrating the diversity and beauty of skin conditions, with patients as the main subjects.

World Vitiligo Day 2022 🇲🇽 Kick-off

Watch the video from Senate here

Watch the Sceintific presentations here

News releases are a tried and tested PR tactic used to get stories published by the mass media. A news release (also known as a press or media release) is a written statement issued to entice the journalist, editor, blogger or influencer to cover a specific story.

A common news release follows the classic formula of Who, What, When, Where and Why. These five points should be covered off in the opening paragraph. The rest of the news release should then be used to expand on these points.

Your primary goal is to make the journalist's work as easy as possible. If your news release conforms to a format that a journalist is familiar with, odds of your story getting published are higher. So, when you’re writing a press release, you’ll have to adopt a journalistic style of writing, - factual, logical and straightforward. A journalist may only skim your document for 30 seconds, thus it has to be also concise and short, preferably under 500 words.

A great news release is accompanied by a short email pitching the story to the journalist – a sort of cover letter which summarizes the content in the release. It is designed to shock and awe the journalist and make it curious to read the news release itself.

If you don't know how to create a news release for the upcoming World Vitiligo Day, you can easily learn how to do so by following our example below. Other examples like an email to journalists or an invitation to a press-conference are available in our Download Center. A sample Letter to the Medical News Editor can be helpful, too. And have fun with other ideas like a special Google's Doodle for the World Vitiligo Day!

FOR IMMEDIATE RELEASE

On June 25th, 2022 A New Turn For 100+ Million People Suffering From Vitiligo

The twelfth annual World Vitiligo Day (WVD) will take place on June 25th, 2022 - with Mexico playing host to this major event. The theme of WVD 2022 is ‘Learning to Live with Vitiligo’ and this marks a pivot from something that was purely about raising awareness, to a wide-ranging initiative that focuses on patient and doctor education.

Each year WVD is officially hosted by a different country and 2022 marks Mexico’s turn, under the presidency of Prof. Jorge Ocampo Candiani. Vitiligo awareness is making large strides in Mexico, thanks to tireless work of Mexican Foundation of Dermatology, under the presidency of Dr. Rossana Janina Llergo, and recently established Vitiligo Foundation of Mexico, under the leadership of Dr. Karen Férez.

WVD has become a global healthcare phenomenon, and the interest generated far outstrips that of other major ‘skin days’, such as World Melanoma Day or World Psoriasis Day, according to Google Trends. Across the world, millions of patients and care providers will soon learn more about how to deal with this unpredictable skin condition.

For the first time, the WVD activities will this year split into three distinct days. June 25th will remain the focal point and be dedicated to vitiligo patients, while June 22nd will be a Scientific Day, and June 23rd will be a Media Day.

Local events will be held in countries on all continents to mark the occasion. Celebrations in the USA are organized by GVF and Minnesota VITFriends on June 24-25th. European activities are coordinated by Vitiligo International Patients Organizations Committee, better known as VIPOC.

The buzz created by WVD – and the wider vitiligo awareness movement – is driving positive change: Just a decade ago, research into vitiligo was at a low ebb. Only two or three companies (at most) were developing vitiligo drugs — a number that now stands at 30-plus — and the first drug for vitiligo may be approved by the FDA this July. In clinical trials a topical ruxolitinib demonstrated an over 75% improvement in 30% patients' facial vitiligo after 24 weeks of treatment; a significantly greater proportion of patients achieved at least 50% improvement in vitiligo noticeability measure.

“World Vitiligo Day continues to grow and prosper,” says Yan Valle, CEO, Vitiligo Research Foundation. “It has evolved over the years and become so big that we have split it into distinct sections. That’s a sign of the urgent need for information that’s craved by millions of vitiligo patients and health professionals across the globe. We are incredibly thankful to our sponsors - including Incyte, the Aksenov Family Foundation and Google - and private donors for their unwavering support.”

Earlier this year, VR Foundation has presented Vitiligo Patient Journey Map, which guides patients and their families through the maze of vitiligo treatment and lifestyle options. Now, it has been translated in 17 languages to mark the WVD and vitiligo community.

Contacts:

Prof. Jorge Ocampo Candiani, MD, PhD

WVD 2022 President

Tel +52 81 8252 9886 or email jocampo2000@yahoo.com.mx

Prof. Yan Valle

CEO, Vitiligo Research Foundation

Tel +1 855 966 3555 or email yan@vrfoundation.org

NOTES FOR EDITORS

World Vitiligo Day – A Brief History

About the Vitiligo Research Foundation: Firmly committed to curing vitiligo, the VR Foundation is a 501(c)3 non-profit, focused research organization, based in New York, USA. It aims to accelerate the end of suffering for millions of people who live with vitiligo through research, support and education.

About Vitiligo: (pronounced vit-ill-EYE-go) is a very complex and generally unpredictable skin disease. Vitiligo causes the skin to lighten in patches across the face and body. It is a poorly understood, non-communicable, immune-mediated skin disease that affects one in every hundred people to some degree. Vitiligo can be treated temporarily — for up to 3-5 years — with varying degrees of success on different parts of the body, but there is no cure yet.

It can strike anyone at any age, but the condition normally develops before twenty – meaning many children are living with vitiligo. The burden of vitiligo falls particularly hard on developing countries, due to misdiagnosis of the disease, little or no access to effective treatments, and widespread stigmatization and discrimination.

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. The prevalence of vitiligo is around 1.11% of the U.S. population, including around 40% of those with the condition being undiagnosed. Numbers in other countries may vary greatly, from 0,5% to 2% of the population, depending on the region and age group.

Please see attached – WVD 2022 logo, Program

The vitiligo community is coming together again on June 25th.

World Vitiligo Day has been celebrated for more than a decade. Thanks to the idea of a different country hosting the campaign headquarters each year, it's been to:

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

2011: 🇳🇬 Lagos, Nigeria

This year, the global campaign headquarters will be hosted by 🇲🇽 Mexico, under the leadership of Prof. Dr. Med. Jorge Ocampo Candiani. 

International theme for World Vitiligo Day 2022 is ‘Learning To Live With Vitiligo.’

The program includes:

• June 22: Scientific Day
• June 23: Media Day
• June 25: Patient Day

VIPOC memebrs and local support groups will organize their events. Celebrations in the 🇺🇸 USA are being organized by Minnesota VITFriends and Global Vitiligo Foundation on June 24-25; details and registration.

How did a small local event to help people with vitiligo in Nigeria develop into a huge global movement in such a short time? Continue reading Brief History of the World Vitiligo Day

World Vitiligo Day 2022 Mexico

Schedule - 2021 Virtual World Vitiligo Day, Saturday, June 26, 2021

• 10:00 a.m. PT Opening Welcome
  

Event host Sharon King (creator of Litty Ligo); Eric Peacock (co-founder of MyVitiligoTeam); and Dr. Iltefat Hamzavi (co-chair of the Global Vitiligo Foundation).

• 10:10 a.m. PT Vitiligo Man of Action
  

Perry Whaley shares his vitiligo story and his dedication to promote social awareness about vitiligo.

• 10:40 a.m. PT MyVitiligoTeam
  

Learn about the power of connecting people with chronic conditions through a dedicated social network. Eric Peacock, CEO of MyHealthTeams, demonstrates the features and benefits of the MyVitiligoTeam online community.

• 10:55 a.m. PT Mental Health and Wellbeing
  

Dr. Lisa Schuster, who has vitiligo herself, is a licensed psychologist specializing in stressful events and experiences. She discusses the importance of emotional wellness during these extraordinary times.

• 11:25 a.m. PT Community Q&A
  

Hear stories and ask questions of other vitiligo community members. Hosted by Sharon King.

• 11:40 a.m. PT Advocacy and FDA Meeting Update
  

Dr. Seemal Desai and Dr. Richard Huggins provide an advocacy update and what we hope to see as outcomes from the FDA advocacy meeting earlier this year.

• 11:55 a.m. PT Doctor Panel and Q&A
  

Medical experts discuss the latest news on vitiligo and answer your questions. Roundtable discussion with Dr. Pearl Grimes, Dr. Nada Elbuluk, Dr. John Harris, and Dr. Victor Huang.

• 12:20 p.m. PT Clinical Trial Overview
  

Dr. Amit Pandya shares information about the latest studies, why they are important, how they're developed, addresses fears, and how to find a trial near you.

• 12:30 p.m. PT Arts of Vitiligo
  

Various authors share the inspiration behind their books about overcoming obstacles, such as Kim Kirkland author of 'Vitiligo Doesn't Scare Me'. Music video by 2WOTONE Terence Johnson, and a trailer for an upcoming vitiligo documentary film.

• 1:00 p.m. PT Closing and Thank You
  

Founder of Minnesota VITFriends, Alicia Roufs, shares a preview of World Vitiligo Day 2022 in-person! Sharon King closes the event and kicks off the post-event socials.

• 1:05 p.m. PT
  

Post Event Social. Turn on your videos and mics to socialize with others living with vitiligo. Ask questions of dietician Jake Webber of E Squared Health; get tips from James Mcleod That Vitiligo Guy about parenting children with vitiligo; and bond with Mark Braxton of VITFriends about being a man living with vitiligo or with Sharon King of Litty Ligo being a woman living with vitiligo.

Read more about WVD USA 2021 speakers.

Click here to join the social event on Zoom immediately following Virtual World Vitiligo Day at 1:05 p.m. PST.

June has been declared Vitiligo Awareness Month by the Governor of Massachusetts, thanks to Valarie Molyneaux and VITFriends from Boston, MA.

Massachusetts is the home state for the majority of biotech and biopharma companies, so there is no doubt they'll take a note.

Another indication of the World Vitiligo Day campaign success is that 18 U.S. State governors and numerous city mayors declared June ‘Vitiligo Awareness Month’ recently.

News releases are a tried and tested PR tactic used to get stories published by the mass media. A news release (also known as a press or media release) is a written statement issued to entice the journalist, editor, blogger or influencer to cover a specific story.

A common news release follows the classic formula of Who, What, When, Where and Why. These five points should be covered off in the opening paragraph. The rest of the news release should then be used to expand on these points.

Your primary goal is to make the journalist's work as easy as possible. If your news release conforms to a format that a journalist is familiar with, odds of your story getting published are higher. So, when you’re writing a press release, you’ll have to adopt a journalistic style of writing, - factual, logical and straightforward. A journalist may only skim your document for 30 seconds, thus it has to be also concise and short, preferably under 500 words.

A great news release is accompanied by a short email pitching the story to the journalist – a sort of cover letter which summarizes the content in the release. It is designed to shock and awe the journalist and make it curious to read the news release itself.

If you don't know how to create a news release for the upcoming World Vitiligo Day, you can easily learn how to do so by following example below.

Other examples like an email to journalists or an invitation to a press-conference are available in our Download Center. A sample Letter to the Medical News Editor can be helpful, too. And have fun with other ideas like a special Google's Doodle for the World Vitiligo Day!

During the entire month of June, the WVD headquarters will hold a 45-minute Instagram Livesessions (@perdoski.id) once a week, on Wednesday nights (7 PM Jakarta time or 5.30 PM India / 2 PM Rome / 1 PM Lagos / 8 AM New York time)

• June 2 : Vitiligo in children
  
• June 9: Vitiligo management
  
• June 16: Quality of Life of vitiligo patients
  
• June 23: Research Update
  
• June 25: World Vitiligo Day (up to 3 hrs)
  

🇮🇹 Rome, ITALY

A broadcast is planned from Aula Magna of Università degli Studi Guglielmo Marconi – where the campaign was announced 10 years ago, on June 23rd.

🇺🇸 Minnesota, USA

VITFriends, MyVitiligoTeam and Global Vitiligo Foundation are organizing the Virtual WVD-USA 2021 event from 12 noon -3 pm Central Time on June 26.

On June 25th, 2021 A Light Will Shine On Vitiligo - The World’s ‘Forgotten’ Disease

The eleventh annual World Vitiligo Day (WVD) will take place on June 25th, 2021 - with Jakarta, Indonesia playing host. This annual event unites researchers, doctors and patients to drive awareness and celebrate the diversity, resilience and determination of the nearly 100 million vitiligo sufferers worldwide.

Vitiligo causes the skin to lighten in patches across the face and body. It is an unpredictable, non-communicable, autoimmune skin disease that affects one in every hundred people to some degree. As yet, there is no known cure. The burden of vitiligo falls particularly hard on developing countries, due to misdiagnosis of the disease, little or no access to effective treatments, and widespread stigmatization and discrimination.

World Vitiligo Day was born in 2011 from the determination of non-profit organizations VR Foundation (USA) and VITSAF (Nigeria), and their supporters across the world, to bring this ‘forgotten’ disease into the public eye. The onset of the campaign has been fueled by Aksenov Family Foundation, whose generosity has been vital in ensuring that WVD has become a global force that’s enriched many lives and brought vitiligo onto the mainstream health agenda.

Huge progress has been made. Ten years ago, two or three companies (at most) were developing vitiligo drugs – a number that now stands at 30-plus. And just this year the U.S. FDA held its very first public meeting on vitiligo, where the community had a unique opportunity to speak directly to key stakeholders in vitiligo drug development. Another indication of WVD’s success is that 18 U.S. State governors and numerous city mayors declared June ‘Vitiligo Awareness Month’.

However, there is still much work to be done and WVD aims to persuade major organizations such as the UN and WHO to give vitiligo the attention it deserves and instil change in the national healthcare policies of member states. Organizers are also looking to the big pharmaceutical companies to introduce more products that satisfy the growing demand for effective treatments.

Each year WVD is officially hosted by a different city and in 2021 it is the turn of 🇮🇩Jakarta to act as campaign headquarters. The honorary captain is Dr. Srie Prihianti Gondokaryono, supported by a strong team from the Indonesian Society of Dermatology & Venereology (Advisor: Dr. Yulianto Listiawan, Vice-President: Dr. Andreas Widiansyah, and Secretary: Dr. Hanny Nilasari).

Unfortunately, the large-scale, in person activities that typify WVD are not possible this year, due to COVID restrictions, so an online event will take place. This is likely to be broadcast from the offices of the dermatological society, and invites patients, doctors, volunteers, journalists and anyone who is interested to drop in and learn more. One key theme will be that patients with vitiligo have the same COVID experience as anybody else and should not fear vaccination.

🇺🇸As ever, the event will be a truly global affair. Other major activities on June 25th include a media event at Aula Magna of Università degli Studi Guglielmo Marconi in 🇮🇹Rome – where the World Vitiligo Day campaign was officially announced nearly 10 years ago. This will be hosted by Dr. Torello Lotti, Full Professor and Chairman of Dermatology at UniMarconi and Yan Valle, Vitiligo Research Foundation CEO.

Then, on June 26th, the 🇺🇸 US-based online event will take place, which is being organized by Alicia Roufs, Minnesota Chapter Leader of the VITFriends Vitiligo Support Group.

“World Vitiligo Day is a massive event and gets bigger every year,” says Yan Valle, CEO, VR Foundation.“COVID-19 may have changed things this year, but it will still be a huge day – both celebrating all we have achieved and shining a light on the prejudice and ignorance that still affects the millions of people who suffer from this poorly understood and misrepresented disease.”

More information available at the WVD campaign website – www.25June.org

CONTACT details for quotes and queries:

Indonesian Society of Dermatology & Venereology

Ruko Grand Salemba Jl. Salemba 1 No. 22, DKI Jakarta 10430 Indonesia

Visit: www.perdoski.org or email at: ppperdoski.org@gmail.com

+62-213-904-517

VR Foundation

1, Penn Plaza #6205 New York, NY 10119 USA

Visit: www.vrfoundation.org or email at: info@vrfoundation.org

+1-855-966-3555

Can you help us with something? We’re doing a massive Vitiligo Quality of Life study.

These studies are pretty standard in dermatology – they help researchers understand the impact of a disease and are normally compared on a case-by-case basis with similar studies. So, what’s with the ‘world-first’ pitch?

Well, the idea this time is to compare the results to a similar study we ran in 2018 in 30+ countries. We had over 5,000 participants then and want 25,000+ from 100+ countries now. Basically, we are seeking feedback on quality of life of vitiligo patients from every part of the world. This has never been done before — in any disease — and I doubt it’ll be repeated any time soon. It’s a BIG THING.

And, believe me, it will grab the attention of Big Pharma, FDA/EMA (and other governmental bodies) to give vitiligo the priority it needs and deserves.

So, we need you – yes, YOU – to help us out here. Please don’t just read and disregard this, as just a few minutes of your time can make a huge difference in the fight against vitiligo. And you get to be part of something that’s never been done before. Neat, huh?

Please click on your country from the list here to complete the anonymous form. It’s just ten short questions, so it’s super-quick.

Thanks! 

Yan Valle

CEO VRF

Incyte has announced positive topline results from its pivotal Phase 3 TRuE-V trial program that evaluated topical ruxolitinib, 1.5% cream in non-segmental vitiligo.

The trials met their primary goals, showing that significantly more patients treated with topical ruxolitinib twice daily achieved a 75% improvement in facial vitiligo, compared to patients treated with control only. The progress was measured by F-VASI75 score from the baseline. The study also track the frequency, duration and severity of adverse events associated with the use of ruxolitinib cream—and so far, no new safety signals were reported.

The company has worked to develop topically delivered ruxolitinib to different skin conditions, like atopic dermatitis and vitiligo, in recent years. Part of the effort has culminated in two Phase 3 trials, TRuE-V1 and TRuE-V2, that each enrolled more than 300 patients aged 12 and above. Details of how many patients met the F-VASI75 score criteria and secondary endpoint remain undisclosed for now. Hopefully, it will be shared at a scientific congress and a medical journal later this year.

However, Incyte shared the overall efficacy and safety profile is consistent with its Phase 2 results. In the earlier trial approximately 30% of patients who used the Phase 3 dose—ruxolitinib cream 1.5% twice daily—experienced a 75% improvement by week 24. The F-VASI75 rate rose to 51% by one year and 66% by two years, although the figure comes from a smaller cohort as some people were lost to follow-up during the course of the study.

An oral JAK1 inhibitor is also in a Phase 2 vitiligo trial, with promising outlook, reflecting Incyte’s belief that more than one drug may be needed to treat the full spectrum of disease severity.

Based on the outcomes, Incyte plans to submit marketing applications for ruxolitinib cream for the treatment of adolescent and adult patients with vitiligo (age 12+ years) to the U.S. FDA and the European Medicines Agency (EMA) in the second half of 2021.

More on ruxolitinib in: JAKs Of All Trades

Do you want to share your #Vitiligo story?

Whether you have been personally affected by this skin condition or have had a close experience with someone who has, now is your chance to submit a 500-word essay about how Vitiligo (or the Vitiligo Pride Community) impacts you.

The first place winner will be awarded $100, and two second place winners will be awarded $75. Five participants will also be awarded a copy of Yan Valle’s “A Nonsense Guide to Vitiligo.”

Submit by May 20th through the Google form and good luck to all!

The eleventh annual World Vitiligo Day takes place on June 25-26th, 2021.

Each year WVD is officially hosted by a different city and in 2021 it is the turn of Jakarta, Indonesia to act as campaign headquarters. The honorary captain is Dr. Srie Prihianti Gondokaryono, supported by a strong team from the Indonesian Society of Dermatology & Venereology (Advisor: Dr. Yulianto Listiawan, Vice-President: Dr. Andreas Widiansyah, and Secretary: Dr. Hanny Nilasari).

The official theme of the year is 'Embracing Life with Vitiligo.'

2020 was a difficult year for so many of us, with COVID-19 creating a pandemic that we have not seen for over 100 years. In the spring, many wondered how having vitiligo would influence the effect of the virus, such as getting more severe effects from the virus, or whether vitiligo might get worse during an infection with it.  

In short, while the pandemic itself seems to have caused worsening of vitiligo in some people (likely by increased stress it has caused), I have not seen an infection with the virus making vitiligo worse, or people with vitiligo having more severe reactions to it. Continue reading Prof. John Harris post

Last year, the vitiligo industry has been badly affected by COVID-19 pandemic. As the world haphazardly endeavors to defeat a deadly virus, many vitiligo projects in China, Germany, South Korea and the United States have been put on hold. But many promising drugs continue to tick along in late-stage trials and approval discussions.

Our exclusive analysis helps you understand competitive environment for vitiligo therapies. A report like this would cost $2,000 minimum elsewhere, but as World Vitiligo Day supporter you can read this free.

It was 2018 when Unite For Vitiligo first released its list of 10 most influential people with vitiligo aka vitiligans. Since then the list has been trying to be a mirror of the vitiligo community and those who shape it. Just like any year, the 3rd edition of “10 Most Influential Vitiligans” lists thought leaders with vitiligo that are working toward a better, inclusive world.

US FDA is conducting its first public meeting on Patient-Focused Drug Development for Vitiligo. The meeting is intended to allow FDA to obtain patient perspectives on the impact of vitiligo, including on daily life, patient views on treatment approaches, and decision factors taken into account when selecting a treatment.

The public meeting will be held on March 8, 2021 from 10 a.m. to 2:30 p.m. EST, in a virtual (online only) format. Please save this date and time if you are interested in attending this public meeting.

Please email the PFDD Staff at patientfocused@fda.hhs.gov if you have any questions.

Virtual but real! The 2020 Vitiligo International Patient Organizations Conference (VIPOC) will be held virtually on Friday, December 4, 2020, followed by Vitiligo International Symposium (VIS) on Saturday and Sunday, Dec. 5-6, 2020.

Held every two years, the Vitiligo International Symposium (VIS) is a flagship conference on vitiligo research and clinical management. Traditionally, the VIS consists of informative podium sessions on a range of scientific issues from around the world, combined with clinical reports featuring proven techniques and novel observations, and additional workshops.

Details and registration

Dr. Seemal R. Desai, M.D., FAAD, highlights new therapeutics that may impact the future of vitiligo management in this short video. He discussed this and other topics at the American Academy of Dermatology Virtual Meeting Experience in June 2020.

“I think that JAK inhibitors are really exciting right now in our quest to find an effective, long-term, safe treatment - as well as potentially a cure for vitiligo,” says Dr. Desai. Find out how he uses these medications in the video below.

Hungarian vitiligo support group kicked off World Vitiligo Day 2020 celebrations with event at the Lake Balaton on June 20th. WVD webinar in China was watched by 5,51 million people!

🇭🇺 HUNGARY

Adrienn Széles, a vitiligo ambassador to Hungary, said an in-person was not even planned – yet over 50 group members showed up for a two-day meeting that traditionally takes place at the lakeside.

This meeting is a symbol of the Hungary and other countries are seeking to return to normal life after the pandemic. It may happen quickly despite concerns from public health experts.

There is a growing sentiment that self-isolation, fear and exaggerated reactions to coronavirus could do more damage than the disease itself. A mandatory social isolation leads to significant increase of severe health conditions, such as cardiovascular disease, dementia and depression.

Yet, this situation is eerily familiar to millions people with vitiligo, who are routinely cut-off from “normal” lives. It reminds us how equally vulnerable we’re all and, more importantly, that we shall all stay connected.

🇨🇳 CHINA

We didn't want to get into the way of the Dragon Boat Festival, which falls on June 25 this year. So, the World Vitiligo Day activities in China were held on June 23rd.

Dragon Boat Festival, also known as Duanwu Festival, is a traditional and important celebration in China. This folk festival is celebrated for over 2,000 years. Dragon boat racing, health-related customs, honoring Qu Yuan and others are the main activities throughout a 3-day national holiday.

The webcast was organized by Prof. Xinghua Gao – an honorary President of WVD 2015. Professor Gao is a Chair of Dermatology and Deputy Director at The First Hospital of China Medical University in Shenyang. His outstanding team of activists have signed 12 thousand (!!!) petitions on the streets of Shenyang and other Chinese cities in just three days in 2015.

🏆 Now, a new record! 5.5 million people watched the World Vitiligo Day webinar in China on June 23rd.

Reported by VR Foundation

Prof. Torello Lotti - WVD's first President and Chair - will guide you through current and future treatments in his unmistakable Italian style video.

In his fast track video, Yan Valle --- WVD's vigilant manager --- zips through 10 years of the campaign and looks into the future.

These three short videos from WVD co-founders will fill your gaps in the campaign history and vitiligo therapies:

Ogo Maduewesi --- WVD tireless spokesperson --- remembers the Purple Fun Day and early days of the WVD campaign in her emotional video.

Inevitably, World Vitiligo Day takes on a new form this year.

As the world grapples with a global pandemic, WVD has moved online. So, there’s a different vibe for June 25th this year – but it will be no less memorable or important.

A celebration is still taking place in people’s minds, hearts and homes. And, as an event that took root in the 2010s moves into the 2020s, it’s worth considering how it will evolve.

In just a few years, WVD has exploded in both significance and attendance. And at a time where BLM movements across the globe are showing that popular sentiment can influence governments and corporations, its presence and purpose are more relevant than ever.

June 25th encourages us all to reflect on equality for people with a different skin tone – or lack of it… No wonder that WVD theme of the years is “SELF: Awareness, Love, Respect, Care”

So, amid the chaos wrought by the virus, a weeklong commemoration is taking place across the world. From Hungary on June 20th to Detroit on June 27th, events are happening everywhere.

World Vitiligo Day grows and strengthens every year – and 2020 is no exception. Because, virus or no virus, it’s vital that people continue to speak publicly about their independence from beauty standards and bias.

And it also matters that we understand the meaning and remember the history of this day as it enters the mainstream.

And next year, when we can all (hopefully) get back together – there’ll be one hell of a party!

Check official WVD Facebook page for the latest news, posters, photos and reports.

World Vitiligo Day 2020 international headquarters continue its journey and move from Vietnam to Serbia, under the firm leadership of Prof. Ivana Binic.

Sadly, the tenth annual WVD celebrations will not go ahead, as planned.

Three months into the novel COVID-19 outbreak, countries around the world are grappling with the challenges of a full-blown global pandemic. Italy has fell off radar as a travel destination earlier this week, sweeping restrictions on public events have been imposed across Europe. Scientific models predict the peak of epidemic across Eastern Europe in May-June. This, of course, is a domino effect.

After carefully weighing the emerging facts and projections, the VRF Board and WVD 2020 President have made the difficult decision that this year’s World Vitiligo Day main celebrations in Serbia will be an online-only, virtual event.

WVD-2020 USA organizers are still evaluating the situation for how to outwit this virus.

In the coming weeks, we will tap into the innovative and agile spirit of our multi-talented community to explore virtual meeting options. We will share additional information with you very soon, and appreciate your patience as we work through the changes.

Our sympathies are with those affected in China, Italy, and all around the world.

How did a small local event to help people with vitiligo in Nigeria develop into a huge global movement in less than a decade? And how did it get so much support that more than 500,000 have now signed a petition asking the UN for official recognition? This is the extraordinary tale of Word Vitiligo Day (WVD), which from humble beginnings has grown into a global day of celebration and action that takes place every June 25th in support of over one hundred million vitiligo sufferers worldwide.

Read the original post by VR Foundation 

A UK-based Life Science Investments has become the first company to confirm it's sponsorship for the World Vitiligo Day 2020 in Serbia.

Founded in 1999 in London by Dr. Christian Diehl, LSI is a pharmaceutical company focused on the areas of dermatology, plastic surgery and aesthetic medicine.

LSI is in the pre-clinical trials for VITILSI, a cream with active ingridients of Coleus forskohlii root and Cassia alata leaves extract. This is the only plant-based formulation in the pipeline with antioxidant, anti-inflammatory and immunomodulatory properties, combined with melanogenesis-inducing properties.

VR Foundation's exclusive analysis Vitiligo Market Insights And Biotech Pipeline Analysis will help you to understand competitive environment for vitiligo therapies, the key biotech companies involved in vitiligo drug development, along with its clinical trial status, pharmacological action, agreements and collaborations, and stock price trajectory.

'How the Globe Celebrated World Vitiligo Day in 2019'  report was published in 'Dermatologic Therapy' by Whiley, - a top name in education, with a 200-year heritage of quality publishing. 

Source: Dermatologic Therapy

The first World Vitiligo Day 2020 Organizing Committee meeting took place at the Conference center of CEU University of Madrid, Spain on October 10, 2019. The meeting started with a light breakfast at 8.00 am, and proceeded with WVD presentation and discussions. The meeting resolutions are as follows:

1. The 10th annual World Vitiligo Day will be celebrated all over the world next year. The WVD 2020 headquarters move from Vietnam to Serbia. The WVD 2020 campaign President is Dr. Ivana Binic MD, PhD. The leader of the Serbian Vitiligo Support Group Mrs. Slobodanka Mijatovi is in charge of patient communication and coordination.

2. The WVD 2020 theme and logo for the international campaign will be presented by WVD President and approved by the WVD Board by the end of November. Local support groups around the world are free to choose their own themes and logos (within the WVD general guidelines, see WVD website for details), or use the officially approved theme/logo.

3. VRF will provide the WVD headquarters and any other vitiligo support group with a website template, downloadable marketing materials and other support to facilitate and coordinate local WVD activities. Support groups from around the world are invited to send their scheduled activities to a united calendar of events to be published on www.25June.org (currently undergoing a major upgrade) and the World Vitiligo Map; send inquiries to Yan Valle at yan@vrfoundation.org

4. Public institutions and private clinics in Serbia and elsewhere in the world are invited to get involved in the WVD 2020 campaign by offering free consultations to vitiligo patients on the week around June 25th, and/or by providing leaflets and disseminating information about the disease through lectures, presentations and master-classes.

5. WVD 2020 Organising Committee will access the opportunity for a special bus tour, dedicated to the WVD campaign, from Belgrade to Nis, stopping in different towns and cities across Serbia; a site inspection visit will finalise the WVD 2020 bus itineraries. (A similar approach was successfully implemented by WVD past-President Prof. Davinder Parsad in Chandigrh in 2014 with promotional vehicles circulating the city on June 25th.)

6. The book “A No-Nonsense Guide To Vitiligo” and brochure 'Vitiligo Question and Answers” will be reviewed and updated by VRF, then translated to Serbian and Croatian language with the assistance of Professor Ivana Binic, Dr. Maja Kovacevic and Mrs. Slobodanka Mijatovi. The book and brochure will be locally published by sponsors and copies donated to public school and university libraries in Serbia; electronic copies will be freely available to eligible organisations upon request.

7. Promotional T-shirts for WVD 2020 will be donated and mailed to the members of vitiligo support groups all over the world, courtesy of Dr. Medhat Abdel Malek and sponsors. The design should be finalised before the end of December 2019 (Drs. Binic, Abdel Malek and Valle are in charge). Estimated number of T-shirts is 2,000 in three sizes (XL, L, M). Local support groups around the world are encouraged to send their requests for up to 20 T-shirts to Yan Valle at info@vrfoundation.org

8. IMCAS and VRF will collaborate in cross-promoting WVD 2020 to the international medical community, including: a special vitiligo session and workshop at the Annual IMACS Congress of Paris 2020 and other events, with an estimated audience of 70,000 specialists. Promo materials for WVD 2020 will be included in the bags of all congresses delegates at IMCAS conventions.

9. VRF and WVD Board will facilitate meeting of WVD President Prof. Binic with the President of the Republic of Serbia and Ministers of Health and Education for WVD campaign promotion, coordination and facilitation at the national level.

10. Vitiligo community members of every country in the Balkans have expressed their enthusiastic support to the WVD 2020 campaign and will provide their assistance in promoting WVD events in their countries.

11. Drs. Binic, Lotti and Valle will make a site inspection visit to Belgrade and other participating locations in Serbia for accessing facilities and personnel to be involved in WVD 2020 campaign. This inspection will be carried out before end of February 2020.

12. Dermatologic Therapy Journal will provide the overall WVD 2020 campaign coverage for their readers, within journal’s editorial guidelines and under supervision of Dr. Binic.

13. WVD Board will establish an International Sponsorship Committee to facilitate funding of WVD activities in Serbia and elsewhere. It will provide fundraising material templates and share best fundraising practices among vitiligo community.

14. WVD Organising Committee invites leaders of vitiligo support groups and activists from around the world to share their experiences and to submit their short “How To < … >” short videos explaining how to establish a new patient support group, recruit members, organise an event, attract funding, sustain and grow the group.

The meeting was adjourned at 10 am and closed with a group photo.

Source: VR Foundation

Feel like getting inspired, motivated or just looking for a feel-good cry? There's no better way to take a break from your day than with a fresh cup of coffee and a nice TED talk from the most respectable name in vitiligo community.

Watch this incredibly moving TED talk from vitiligo spokesperson, 4x Emmy Award winner, Fox2 TV entertainment guru, and our best friend, Lee Thomas. His extremely personal talk explores the uncomfortable feeling of vulnerability and suggests the way out of a daily stress.

World Vitiligo Day has once again swept the globe in a day of celebration and action in support of the estimated 100 million vitiligo sufferers worldwide.

Dermatologists are well aware that vitiligo is an under-investigated, non-communicable, autoimmune skin disease that affects one in every hundred people to some degree; it can strike anyone, at any age. General public largely knows that vitiligo causes the skin to lighten in patches across the face and body and it is incurable, some celebrities have it, – but that typically marks the extent of common wisdom. 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 (WVD), which takes place annually on June 25th since 2011, brings this ‘forgotten’ disease into the public eye and is now one of the biggest events of its kind on the planet. And what a day it was for the 2019 event!

WVD is a global initiative, so the campaign international headquarters moves across the globe each year. It was envisioned by a vitiligo patient in Nigeria, built up by a non-profit organization in USA, launched at the university in Italy, then touched down at major hospitals in India, China, the Czech Republic, Brazil and the U.S.

WVD 2019 started with a three-day event in Sugar Land town in Texas, organized by Houston Vitiligo Awareness Movement (Figure 1.) Among the many honored guests were Lee Thomas, 4x Emmy-award nominee from Fox2TV in Detroit, TX; Valarie Molyneaux, leader of VITFriends from Boston, MA and Natalie Ambersley, leader of the UK Vitiligo Society.

The U.S. national theme this year was ‘The Mental and Medical Journey of Living with Vitiligo – The Journey Starts with Me!’, with an impeccable collection of speakers and experts on hand to discuss the current state of affairs and look to the future. Dr. Amit Pandya – of UT Southwestern Medical Center in Dallas – opened proceedings with a wide-ranging talk, which touched on everything from the importance of early treatment to the dangers of mixing phototherapy with Ayurvedic medicine.

After that, excellent speakers took to the podium with energizing regularity. Dr. John Harris – Head of the Vitiligo Center and Clinic at UMMS, Boston – shared impressive results from Incyte’s Phase II clinical trials for Ruxolitinib cream and his outlook for future drugs. Child health expert Dr. Lisa Schuster delivered incredible advice on dealing with the emotional aspects of vitiligo — including the importance of body posture. The inspiring Dr. Pearl Grimes, from the Vitiligo & Pigmentation Institute of Southern California, discussed post-diagnosis coping strategies. ‘A Children’s House’ author Dr. Alanna Bree talked on the emotional and spiritual wellbeing of children with vitiligo, and helped parents and kids at the adjacent conference room.

On the buzzing sidelines, Dr. Kettil Cedercreutz raised concerns about the cost-benefit balance for vitiligo patients, while revealing details of a different treatment approach involving DNA-based therapy with HSP70i. Dozens of tables at the entrance hall were packed with all kinds of products and art from incredible vitiligo talents across the range.

Next week in Hanoi, Vietnam – headquarters for global WVD 2019 – the theme was ‘The Quality of Life of Vitiligo Patients’, which aimed to promote understanding and help vitiligo patients avoid discrimination and become more optimistic in life. Dr. Nguyen Van Thuong, Director of Vietnam National Hospital of Dermatology and Venereology (NHDV) is an honorary President of WVD 2019. He opened proceedings with an impassioned speech that highlighted the golden opportunity for doctors to absorb vitiligo updates, and for patients to share their life and aspirations with society. A host of stellar speakers followed, starting with Dr. Torello Lotti, of G. Marconi University in Rome (whose vigor and determination were instrumental in the launching of World Vitiligo Day) who presented on ‘Herbal Treatment of Vitiligo’.

An equally impressive cast list followed: Dr. Le Huu Doanh, NHDV, on ‘The Situation of Vitiligo Comes to National Hospital of Dermatology and Venereology’; Dr. Nawaf B.S.N. Al-Mutairi, University of Kuwait, on ‘Life Quality of Vitiligo Patients’; Dr. Michael Tirant, Psoriasis, Eczema and Vitiligo Clinic, on ‘Virus, Superantigens and Vitiligo’; Dr. Nguyen Trong Hao, Ho Chi Minh City Hospital of Dermatology and Venereology, on ‘Melasma According to View of Photoaging’; and Dr. Davinder Parsad, PGIMER, on ‘A Journey: Tissue Grafts to Cellular Grafts’, and Yan Valle, CEO of Vitiligo Research Foundation, on ‘Social and Economic Impact of Vitiligo’.

But, of course, WVD is a global occasion, so innumerable other events were taking place across the world, both on- and off-line. Here are some of the other highlights:

• In Melbourne, Australia, the Vitiligo Association of Australia hosted a gathering where its newly appointed secretary Nada Karadzic highlighted the need to celebrate WVD in a spirit of inclusiveness and acceptance. Dr. Adrian Mar lectured on recent advances and cautioned the audience about trade-offs and uncertain benefits of ‘natural products’ for vitiligo.

• In São Paulo, Brazil, a team led by Dr. Paulo Cunha (President of WVD 2017) used the day to educate people on the non-contagious nature of vitiligo and highlight the need for investment to improve research. Advertising and word-of-mouth caused large numbers of patients to gather at the newly established phototherapy center.

• In China, the Vitiligo Research Centre of the Chinese Society of Dermatology, directed by Dr. Xinghua Gao (President of WVD 2015) organized a multi-faceted national event, which saw hundreds of dermatologists spread public awareness of vitiligo through lectures, TV coverage, free consultations and digital chat.

• In Holguin, Dr. Jorge Luis Pérez, President and Founder of Cuban Vitiligo Support and Research Group organized WVD event for patients that generated a mass media coverage, – a rare occasion for a dermatological condition that very few on the Freedom Island have heard about before.

• In Zagreb, Croatia, a ‘Living With Vitiligo’ event took place at the Clinical Hospital Centre’s Department of Dermatology and Venereology. Psychologist Domagoj Mihatovic gave a talk, followed by round table discussions involving Dr. Andrija Stanimirovic, patients and physicians, and a TV show with Dr. Maja Kovacevic participation the next day.

• In Tehran, Iran, program at the Research & Training in Skin Diseases & Leprosy Centre included an opening lecture from directors Dr. Dowlati and Dr. Firooz, followed by Dr. Seraj on pathogenesis of the disease, Dr. Kashani on medical treatments, while Dr. Mousavi and Dr. Ayatollahi demonstrated surgical therapies.

• In Shymkent, Kazakhastan – a third major hotspot for WVD 2019 activities – Dr. Aliya Kassymkhanova and colleagues from the Regional Dermatovenerological Hospital coordinated a nation-wide, week-long vitiligo awareness campaign, with over eight hundred participants attending series of lectures on vitiligo and other hypopigmented skin conditions, new treatments, quality of life, and more. Live demonstrations of surgical techniques also took place at the hospital, – a regional hub for vitiligo research and care, and a home base for ‘Vitiligo School’ for patients since 2010.

• In Monterei, Mexico, Dr. Jorge Candiani hosted an event at the Monterrey University Hospital, where patients enjoyed a series of talks, and were given small gifts, before enjoying a drink with the assembled medics! The event was covered by TV and newspapers. Dr. Karen Ferez also held artistic WVD celebrations in Mexico City.

• In the UK, Dr. Andrew Thompson from the University of Sheffield gave a special WVD lecture: ‘Addressing the Psychological Needs of People Living with Skin Conditions: What Works, What is Available and What we Need to Do’.

• In Lybia, Dr. Gamal Duweb – President of the Libyan Society of Dermatology – and his brave staff still marked World Vitiligo Day, even though the country is locked in civil war.

• In Russia, Dr. Konstantin Lomonosov hosted celebrations at Moscow’s 1st Medical University, with free consultations for dermatology department patients, and lectures to residents. Dr. Lomonosov also announced that a specialized vitiligo clinic – the first of its kind in the sprawling mega-city – would open by the end of the year.

• In Myanmar, Dr. Vernette Sann coordinated and oversaw multiple WVD events in three separate hospitals – ‘All About Vitiligo’, ‘Is Surgery the Answer to Vitiligo Treatment?’ and ‘Can Vitiligo be Cured?’, which were all covered by national TV and print media. Their next year’s theme is ‘Vitiligo – A Holistic Approach’.

• In Sri Lanka, Dr. Ajith Prasanna Kannangara organized the country’s first ever WVD celebrations that reached out to every corner of this beautiful island. The event included social media activity, a major TV show, and an education program for patients and medical staff at Base Hospital, Balapitiya. Lectures were also given by Dr. Hettiarachchi, a senior medical officer and a psychologist Dr. Wickrama.

• In South Africa, Dr. Noufal Raboobee oversaw events in hospitals in both Durban and Cape Town, which featured talks by Prof. Aboobaker, Dr. Khoza, Dr. Sacoor and Dr. Sibisi to help patients better understand their own relationship with vitiligo. The events were covered by radio channels, while a 1-hour national TV show on vitiligo screened the same day. The ambitions for 2020 are set to involve other provinces in WVD celebrations.

Once again, World Vitiligo Day campaign has highlighted the strength, ingenuity and determination of patients, medics, support workers, volunteers and everyone else connected with the wonderful global vitiligo community. It was truly a day to remember.

In 2020, WVD headquarters will continue its international journey and come to the capital city of Serbia, under the honorary presidency of Prof. Ivana Binić, MD

Happy World Vitiligo Day! It's time to let our freak flags fly and live the emotions that we feel in the depths of our being.

Before I share with you my excitement about the World Vitiligo Day 2018 conference we just wrapped in Boston, I must tell you about our meeting at the United Nations the day before. We're slowly navigating the complex web of spoken and unspoken rules of the UN's Economic and Social Council to get to our ultimate goal: an official recognition of the World Vitiligo Day by the UN General Assembly. There are no official guidelines on 'How To Make A World <something> Day' at the UN, so we're building up our case and collaborations now.

Now back to the conference, held at University of Massachussets just outside of Boston. The theme this year was 'Children, Research, and Hope for the Future.' Dr. John Harris and Valarie Molyneaux deserve special recognition, yet we should also thank Tiffany Grant, Barbara Hamilton, Erika Page, Patricia Roissy, Alicia Roufs, April Sawyer, Lee Thomas, among many awesome volunteers who contributed to this outstanding event.

Passionate speakers were equally impressive with presentations on Parenting Child With Vitiligo by Dr. Lisa Schuster, Enigmas of Childhood Vitiligo by Dr. Pearl Grimes, a collective Research Update moderated by John Harris, and unlocking the Dead Sea secrets by Dr. Aliya Kassumkhanova.

International guests, like Jean Marie Meraunt from Paris, France shared his perspective on vitiligo, Nunu Galot from the London, UK exposed prejudice towards vitiligo, while Marilynn Burch-Harvey came from Edmonton, Canada to learn how to start a support group.

If you missed the live broadcast, watch the recording on YouTube (Day 1, Day 2) My hat off to the IT and support team at UMass for their seamless integration of all high tech tools you can think of.

We tend to think less of our abilities and we discount our success. No more! We did it for seven years in a row, against all odds. The World Vitiligo Day is our day. Let's celebrate!

Forgive me for writing to you with such haste. Recognize that I am writing stream-of-consciousness onboard the plane, heading from Hanoi, Vietnam to the third World Vitiligo Day conference, — this time in Shymkent, Kazakhstan. I am emotionally overwhelmed and trying to assimilate the most stimulating and overpowering of annual event for our community.

In retrospect, speakers in Houston discussed the current state of affairs and looked out over the horizon. Both kinds were equally important, and their presentations were certainly worth the price of registration fee. All speakers didn’t just fly in and out, they stayed for all three days, — both to meet other speakers and meet 300+ attendees. It was a wonderful experience!

WVD conference in Hanoi had a family-like atmosphere, where everyone comes with their own gifts. Dr. Nguyen Van Thuong introduced speakers and delegates, and dashed through the numerous WVD activities at the National Hospital of Dermatology and Venereology, and around the country. He set the overall tone for the day in a language I couldn’t understand, but bursts of positive emotions were going through the roof.

Davinder Parsad from Chandigarh, India is one the world’s leading experts on vitiligo surgery and other treatments. His excellent presentation “A journey: tissue graft to cellular graft” included several educational videos. Later, Prof. Parsad performed a live demo of a transplantation technique, calmly explaining intricate details of the procedure to Vietnamese colleagues and dermatology residents.

Michael Tirant’s deck of slides on “Viruses, Superantigens and Vitiligo” made me think to re-open our own investigation into the matter. Apparently, Epstein-Barra virus isn’t that insipid and may cause an adverse chain reaction that result in a vitiligo patch. Prof. Tirant's second presentation focused on lifestyle and dietary choices for vitiligo patients. Every slide was loaded with multiple bullet points to convince the non-believers.

Torello Lotti needs no introduction. His invaluable contributions to the campaign are innumerable. Without him, we might not even have the World Vitiligo Day at all! A charismatic speaker, Prof. Lotti is surely enjoying large audiences that are keen to learn about vitiligo from the top expert in the field.

If Michael is more like a shotgun, Torello is a high-velocity machine gun with 100+ slides in his deck. His lecture on “Herbal Treatment of Vitiligo” resonates with the local traditions that aim to balance mind and body with the nature itself. The next generation of herbal treatments — either cosmeceuticals or nutraceuticals — might provide the necessary relief to the patients that choose traditional medicine over pharmaceutical products.

I could go on and on about the other speakers. Prof. Nawaf B.S.N. Al-Mutairi discussed the situation of vitiligo in the country and patient’s quality of life, while Prof. Nguyen Trong Hao shed light on photoaging-induced melasma.

Needless to say, June 25th marked another record with nearly 800 patient attendees in two days. You have to see this incredible dance show performed by vitiligans from all over the country. Congratulations to the dozens of winners of the donation prize draw. 

Now, I know you wish you could’ve been there. I wish you had been there too. Your personal presence would have made it even better. Why not make plans for the next year now?

In 2020, the World Vitiligo Day headquarters will continue its international journey and move from Hanoi to Belgrade – the outspoken, proud and audacious capital city of Serbia.

Lastly, a world of thanks to Vitilinex, the WVD International conference sponsor. This Australia-based company developed a range of herbal products for vitiligo and other skin conditions. Research indicates that Vitilinex® herbal bio-active ingredients in combination with nbUVB may be an effective treatment option for 87% vitiligo patients of Asian origin that participated in a study.

Yan Valle

CEO VR Foundation

Source: VR Foundation

Greetings from Sugar Land, TX, where we just wrapped Day 2 of the World Vitiligo Day 2019 Conference.

After eight WVD experiences, I thought I had seen it all, and it couldn’t get any better — especially after the one in Boston last year. Nope, far from it. Day 2 has been a whirlwind of amazing speakers, informative presentations, and fascinating sideline conversations. So this post is a lengthy one!

The first tune of the day, perhaps, was a little overwhelming for me. A welcome presentation by the Global Vitiligo Foundation — a big sponsor and supporter of the World Vitiligo Day conference in the US — delicately avoided the history of the World Vitiligo Day itself. Weird, I know... This and other little things that were left unsaid reveal a fundamental disconnect in how different vitiligo leaders see ‘unity’ in the community. However, an emotional video featuring many familiar faces with personal notes was truly touching.

Dr. Amit Pandya opened the day with an overview of vitiligo therapies. His wealth of experience drives thousands of vitiligo patients of all skin types to UT SouthWestern in Dallas. He stressed the importance of an early treatment — within two years from the onset — but suggested a more aggressive approach if a confetti-like depigmentation pattern is observed (as seen in up to 46% of all patients). Patience is a true virtue in a therapy that rarely achieves 100% success rate and relapses may happen in up 40% cases within one year. Just don’t mix phototherapy with Ayurvedic medicine — or it might cause a second-degree burn — and get a portable UVB for a supervised home use.

Dr. John Harris is one of the world’s leading specialists on vitiligo, and a head of Vitiligo Center and Clinic at University of Massachusetts in Boston. John shared impressive results from Incyte’s clinical trials for Ruxolitinib cream — more in the previous newsletter — and continued with other emerging treatments. Somewhere along the lines of academic research John found an opportunity to launch a new biotech company, Villaris Therapeutics, that takes similar approach to Amgen’s but with different IL15 target in sight. I wish I could ask John more questions, but there’s always a lineup of attendees waiting to catch on the rare opportunity to chat with him. I hope to follow-up with John on our sideline conversation about segmental albinism vs segmental vitiligo.

Dr. Lisa Schuster took the stage after lunch — a challenge at most conferences because people get sleepy. She made everyone sit bolt upright, though. Her practical advice on how to deal with emotional aspects of vitiligo — including body posture! — is truly invaluable. The next speaker was Dr. Pearl Grimes, without whom no vitiligo conference would be representative enough, to discuss coping with the condition after the dreadful diagnosis. Dr. Alanna Bree focused her talk on “Emotional and Spiritual Wellbeing of Children with Vitiligo” and helped parents with kids at the adjacent conference room.

At the back of the room, Kettil Cedercreutz, CEO and founder of Temprian Therapeutics, shared my concern regarding the cost-benefit balance for vitiligo patients. There simply aren’t that many people in the U.S. actively looking for new treatments — while competition is heating up. Kettil is confident about perspectives of DNA-based therapy from Temprian, representing a different approach to treatment. We spoke about endpoints they could monitor for HSP70i, the ideal patient, and about biotech investor sentiment in general.

Lee Thomas and Erika Page steered the conference all day long, on and off-stage, to take attendees to the whole new level of friendship and excitement. Shazaad Games, one of the attendees, draw my attention to the FOX 26 TV coverage of the World Vitiligo Day during the morning show.

Last but not the least I would like to thank Incyte for providing vital sponsorship to this conference. Why have so many pharmaceutical companies been off about vitiligo for so long? In part that’s because they were looking for patterns to support their preconceptions, — rather than looking for exceptions.

But vitiligo has always been sui generis — largely an exception among dermatological diseases; often perceived as a cosmetic disorder; ignored by insurance companies; misunderstood by the public. Incyte has turned that page first, to start with a fresh perspective on the community, years before a drug (if all goes well in Phase III trials) would reach patients. David Dubinsky, Head of Patient Advocacy, and his team really impressed many attendees with a low-key, attentive attitude to what everyone has to say.

And with that I will hit the Send button. I have a flight to catch to get to the global World Vitiligo Day headquarters in Hanoi, Vietnam. I will get back to you in a couple of days with more news about the most important week of the year for vitiligo community.

Until then,

Yan Valle

CEO VR Foundation

Source: VR Foundation

I’m writing this  to share with you a few highlights from the World Vitiligo Day Conference just outside of Houston, Texas. 

Special thanks to Diane Tribitt and her great HVAM team for making it all possible. The conference began Friday evening, when I had the pleasure to mix & mingle with key people in vitiligo community and research.

Lee Thomas — who needs no introduction — kicked off the annual celebrations with an emotional speech; check out photos and videos on WVD Facebook now. Emoetry Speaks took over the stage with a poetic expression of vitiligo lifestyle. A fashion and dance show rocked the ballroom until late evening.

In between the bursts of energy and laugher I had a chance to chat with Laura Bosworth, president of TeVido BioDevices. Laura is dynamic former Fortune 50 executive, so she is most definitely worth listening to. TeVido is prepping for a product launch in a few weeks, and we agreed I will report separately on this.

The main WVD 2019 theme in the U.S. is ‘Vitiligo Journey — Healing Starts With Me!’ and this conference may have a significant consequence for everyone. I expect a great deal of insights that will steer the vitiligo therapy development into a certain direction.

I can’t possibly explain in an email everything that’s been discussed on the WVD stage so far, but one attendee said to me, “I’ve already learned more about vitiligo in two hours than I have all year.” And we’re just getting started.

My apologies for not being able to do a live broadcast from the conference because of the poor internet connection there. If you want to see videos, photos, and presentations of this amazing conference, check out our website in a couple of days.

I’ll be back with more later today, including notes on treatments from Dr. Amit Pandya and research update from Dr. John Harris.

Until then,

Yan Valle

CEO VR Foundation

Source: VR Foundation

June 21st might be one of 2019 most important dates for all of us this year. That’s because the conference themed 'The Mental and Medical Journey of Living with Vitiligo - The Journey Starts with ME!' in Houston (TX) kicks off the World Vitiligo Day celebrations. So much information packed into just three days.

A panel of well-known speakers will cover various subjects, from new research discoveries through treatments to coping with vitiligo effects (program, PDF). But you don’t have to attend all the presentations in three days. The main events will take place on June 22. Catching just half a day of your favorite speakers live is an exhilarating experience. You can’t replicate it on video, it isn’t the same.

Personally, I can't wait to hear what Dr. John Harris has to say about excellent results of Phase II clinical trials for topical ruxolitinib, a selective JAK inhibitor. If all goes well in the Phase III trails scheduled for late 2019, this compound could be the first FDA-approved medical treatment to reverse vitiligo. For plain language details check announcement from Incyte or download a scientific presentation from UMass, — if you aren't easily scared by graphs and formulas.

The whole concept of synergistic therapies for vitiligo has been around for quite a while — like bFGF peptide lotion currently marketed in India but patented worldwide. It's therapeutic effects are usually hit or miss, in my practical observation. But new approaches to disrupting the signaling pathways and other anti-autoimmune therapies under development seem to be distinctly different, or else we'll be witnessing a messy patent battle.

However, if you can't physically be present at the conference — like most readers — I hope to transmit this collective excitement and wisdom somehow through the live stream either on the official WVD Facebook page or our Instagram. So if you’re at all interested vitiligo matters, don’t deprive yourself of the fun and save June 22nd for your virtual attendance.

Yan Valle

CEO VR Foundation

Source: VR Foundation

In conjunction with Vitiligo Awareness Month, Zanderm launched their 'Color Me Confident” campaign. In the United States, Zanderm is offering a free precision applicator ($25 value) to children with vitiligo. This will give any child with vitiligo the opportunity to experience a great new way to hide white spots on the skin, as needed.

Vitiligo camouflage maker Zanderm was launched in 2015 on the World Vitiligo Day. Over the years, the company has perfected a unique formula that, unlike makeup, will not easily smudge or wear off. Zanderm infused this formula into applicators that can put color exactly where you want it. The wide range of shades helps camouflage virtually any type of skin and vitiligo lesions with confidence.

Join this campaign and receive a free precision applicator for your child. Simply fill out the application form which you will find on Zanderm’s website. A cosmetic specialist will walk you through the process of finding the most appropriate shade for your child. This free offer will be available for a limited time.

Source: Zanderm

Dear Editor,

This letter seeks to update medical news editors, as well as clinicians, health ministries, insurance companies, philanthropic institutions, patients and their caretakers on vitiligo, a neglected skin disease, and the World Vitiligo Day campaign.

What Is World Vitiligo Day?

World Vitiligo Day (WVD) has been celebrated every June 25th since 2011. WVD’s original purpose was to bring this ‘forgotten’ disease into the public eye, by raising awareness, portraying its true nature, and debunking common vitiligo myths. And, over the years, its purpose has broadened to recognize the hurt caused to millions by the bullying, social neglect, psychological trauma and disability that affects those with vitiligo – who are also known as ‘vitiligans’.

WVD is a global enterprise, so the campaign headquarters (HQ) moves across the globe each year. It was envisioned in Nigeria, built up in Italy, then touched down in India, China, the Czech Republic, Brazil, and – last year – the US.

The role of VR Foundation is to coordinate the global effort, while national and local vitiligo support groups organize walks, picnics, parades, and other events. Also, clinics and volunteer doctors offer free skin screening programs, education and consultations to the public.

For 2019, WVD HQ is in beautiful Hanoi, Vietnam, under the presidency of Prof. Nguyen Van Thuong. The international theme of this year is 'The Quality of Life of a Vitiligo Patient.'

Source: Dermatologic Therapy

The World Vitiligo Day is observed annually on June 25 since 2011. The campaign was born from the determination of non-profit organizations VR Foundation (USA) and VITSAF (Nigeria), and their supporters across the world, to bring this ‘forgotten’ disease into the public eye, and to shine a light on challenges faced by those suffering from vitiligo.

With each passing year the World Vitiligo Day grows bigger and bolder. And with it, recognition of vitiligo grows, particularly since Winnie Harlow, supermodel and vitiligan, walked the Victoria’s Secret Fashion show – one of the hottest fashion tickets on the planet – last fall. What’s more, six U.S. State governors and numerous city mayors have now declared June ‘Vitiligo Awareness Month.’

Why World Vitiligo Day is Important

More than 100 million people around the world suffer from vitiligo. The campaign helps disseminate important information that can help ease the pain of those living with vitiligo.

Through events such as runs and walks, campaign brings together vitiligo sufferers along with their friends and family to show demand for specialized treatments. The day is also marked by educational seminars designed to share the latest scientific and medical research.

Through outreach to potential supporters, campaign raises funds for local support groups, medical centers and academic researchers.

What and Where

The international headquarters are set in beautiful Hanoi, Vietnam this year. The Honorary Chairman of the World Vitiligo Day 2019 is Prof. Nguyen Van Thuong, MD. The international theme of this year is 'The Quality of Life of a Vitiligo Patient.' A panel of renowned speakers will cover a whole range of topics in vitiligo: from novel herbal treatments by Prof. Torello Lotti to Viruses and Superantigens by Prof. Michael Tirant, and all the way to surgical therapies by Prof. Davinder Parsad. Prof. Yan Valle will present the history of WVD campaign and discuss socio-economic burden of vitiligo. As a part of celebrations, National Dermatological University Hospital of Hanoi, other hospitals and clinics across the country will host special events for vitiligo patients. A great deal of support comes from Vietnamese Government. Details and Program

US-based members of the vitiligo community are invited to meet in Houston, TX, for a conference organized by Houston Vitiligo Awareness Movement, led by its founder Diane Tribitt. The national theme is 'The Mental and Medical Journey of Living with Vitiligo - The Journey Starts with ME!' The conference sessions will cover various subjects, such as: New Research Discoveries; Treatment of Vitiligo; Coping / After the Diagnosis; Addressing the Physical, Social, Emotional, and Spiritual Wellbeing of Children with Vitiligo, by well-known speakers including Dr. Amit Pandya, Dr. Alanna Bree, Dr. Pearl Grimes, Dr. Lisa Schuster and Dr. John Harris. Details and Program

How to Observe the World Vitiligo Day

1. Sign petition and share your story here on 25June.org, official Facebook page or organize your own online group. Human stories are the best way to spread awareness and help the public better understand vitiligo.
2. Take a walk. Check with your local vitiligo support group for runs or walks that take place on or around June 25. If there's no local group or event in your area yet, organize one! Few T-shirts and lots of petition leafleats are on us!
3. Participate in a conference in Houston (USA) on June 21-23 or in Hanoi (Vietnam) on June 24-25, or tune in for a live broadcast.
4. Donate $25 to the local support group of your choice or VR Foundation to expand the campaign in 2020!

Support for the event is huge and well over 500 thousand people from across the world have now signed a petition that asks the UN Secretary General to officially designate June 25th as World Vitiligo Day. 

However, there is still much work to be done. Campaign organizers aim to persuade major healthcare providers and Big Pharma to give vitiligo the attention it deserves and develop effective treatments for this disease.

A special Thank You note to our supporters: The World Vitiligo Day 2019 International conference is sponsored by Dr Michaels Vitilinex (for Vitiligo) by Dr Michaels Skin Clinics.

The 8th celebration of World Vitiligo Day was held at UMass Medical School in Worcester, MA on June 22-24, 2018. 

The conference was hosted by Dr. John Harris, the Director of the Vitiligo Clinic and Research Center at UMass Medical School, and Valarie Molyneaux, founder and President of VITFriends.

From the pre-event planning and build-up to the event itself, the World Vitiligo Day USA conference 2018 was the most successful yet. More than 400 people attended the conference, which included two keynote speakers and more than 20 presenters, five sessions and lab tours over the course of three days. The networking and social events were enjoyable and re-instilled the sense of camaraderie that UMASS is known for.

The theme “Children, Research, and Hope for the Future” not only reflected our commitment to the cause but also the foundation upon which vitiligo community continue to thrive. Our goal was to sound the alarm that: 1) Vitiligo is a skin disease worthy of attention. 2) Funding for research into the cause and cure of vitiligo is sorely needed. 3) Adequate coverage of proven treatments for vitiligo is a right for patients. 4) Federal and local support for patient advocacy is needed.

Watch the live broadcast recording on YouTube: Day 1 (4 hr. 35 min) and Day 2 (2 hr. 56 min).

Many thanks to those who made the a tremendous success!

Source: VR Foundation

In 2018, the 7th celebration of World Vitiligo Day will be will be held at UMass Medical School in Worcester, MA on June 22nd-24th, 2018, and hosted by Dr. John Harris, the Director of the Vitiligo Clinic and Research Center at UMass Medical School, and Valarie Molyneaux, the President and Founder of the VITFriends support group based in Boston, MA.

The title for the event is “Children, Research, and Hope for the Future”, and will feature a session focused on children with vitiligo together with another session with vitiligo experts talking about their own research to improve the lives of patients with vitiligo. There will be plenty of time for all to socialize and get to know each other.

Details and registration

The campaign headquarters were set up in Sao Paulo, Brazil, under the presidency of Professor Paulo Cunha. He is well known for his unerring support for the vitiligo cause and he does incredible work with underprivileged communities, including with many Amazonian tribes - who have no access to medical care or dermatological services.

Prof. Cunha is truly committed to bringing the best tools and techniques in the treatment of vitiligo and to fellow dermatologists and patients, organizing national master classes on vitiligo in 2013 and 2016, and holding World Vitiligo Day events since it's inception.

In the US, main celebrations were held in Detroit on June 23-25, under the leadership of Lee Thomas, hosted by Southeast Michigan Vitiligo Support Group.

This year's rally and other events were one of the largest and most exciting in history of the World Vitiligo Day. Prof. Jana Hercogova, the Chair of WVD 2016 campaign, held a key media event in beautiful Prague.

Celebrations across the world continued the whole weekend. A series of events were held in Washington DC on June 24-25. This idea came alive after a successful rally at the Massachusetts State House organized by VITFriends from Boston last year. Yet nobody could expect that number of participants would grow exponentially. This year, Valerie Molyneaux led a 300-plus rally, representing an array of activists, nonprofits, and also researchers, healthcare workers, politicians and elected officials. We posted a quick report about World Vitiligo Day 2016 campaign

World Vitiligo Day 2015 campaign headquarters are in Shenyang, China, under the presidency of Prof. Xing-Hua Gao, MD. Thousands of vehement volunteers around the world raise awareness for vitiligo on the streets and in the media, in addition to 30+ major hospitals receiving vitiligo patients and holding education events today. 

This year all events started much earlier, on 13 Feb 2015, when the General Body Meeting of Indian Association of Dermatologists, Venereologists and Leprologists (IADVL), the largest representing society of Indian Dermatologists, has approved the changing of IADVL VITILIGO Day from May 19th to 25th June.

In the last three years, campaign grew from a few volunteers handing out fliers in the streets and a small number of dedicated doctors to 484,687 activists and 50+ clinics offering free skin check-ups in 17 countries. 

We have already set up two new 'world records' with 225 vitiligo patients seen by dermatologists in the morning at the PIGMER hospital, and 800+ doctors attending events in the afternoon. Forty WVD-branded rickshaws paraded the city of Chandigarh in India, the host of World Vitiligo Day 2014, all day long.

This year, the World Vitiligo Day changed it's headquarters from Rome (Italy) to Detroit (USA) and was celebrated in a series of events, from the distribution of leaflets to large gatherings, which have made each World Vitiligo Day a huge success and generated worldwide media interest: Fox TV interview with entertainment guru Lee Thomas, roundtable with Henry Ford Hospital Dermatology Chair Dr. Henry Lim, art-project with Stephanie Corne and so on. We collected 130,929 signatures to date.

An ambitious global event, the second World Vitiligo Day was held on the week of 25 June this year. It also marks the passing date of pop-star Michael Jackson, a long-time vitiligo sufferer. The event started with the press conference in Rome on June 22nd, continued with free dermatology consultations across Italy over the weekend, rolled into street events in Brazil and Nigeria, appeared on media radars and screens in Botswana, Chad, China, Czech, France, India, Macedonia, the UK and USA on June 25th, and finished at the national dermatology congress in Russia on June 26th.

The first Vitiligo Awareness Day or Purple Fun Day - what it was called then - was brought to life by Ogo Maduewesi, Founder and President of Vitiligo Support and Awareness Foundation (VITSAF) at Silverbird Galleria, Victoria Island in Lagos, Nigeria. The online petition was launched on the website Petitions24 on June 18, 2011. First 111 signatures were collected on the first World Vitiligo Day. Early next year, VR Foundation helped to re-name the campaign, developed marketing materials and launched www.25June.org, which became the official site of the World Vitiligo Day campaign, on January 18, 2012.