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The 8th annual World Vitiligo Day (USA) conference, held from June 22-24, 2018, at the University of Massachusetts Medical School in Worcester, set a new standard for vitiligo awareness events.
Co-hosted by Dr. John Harris, Director of the Vitiligo Clinic and Research Center at UMass Medical School, and Valarie Molyneaux, founder and President of VITFriends, the conference attracted 315 participants from seven countries, including the USA, Canada, Brazil, Kazakhstan, Guadeloupe, Australia, and France.
Under the theme "Children, Research, and Hope for the Future," the three-day event featured an impressive lineup of two keynote speakers and over 20 presenters across five sessions. The conference kicked off with lab tours at the UMass Vitiligo Clinic, offering attendees a firsthand look at cutting-edge research in the field.
Day two began with global expert videoconferences featuring vitiligo specialists from Morocco, China, South Africa, and India. Highlights included Dr. Lisa Schuster's presentation on "Parenting Child With Vitiligo," Dr. Pearl Grimes' talk on "Enigmas of Childhood Vitiligo," and a comprehensive Research Update moderated by Dr. John Harris. Dr. Aliya Kassumkhanova shared insights into the therapeutic potential of simulated Dead Sea environments for vitiligo treatment.
The conference boasted an impressive roster of speakers, including Drs. David Rosmarin, Victor Huang, Amit Pandya, Iltefat Hamzavi, Bassel Mahmoud, Nada Elbuluk, Brett King, Caroline Le Poole, Stanca Birlea, Prashiela Manga, and Michael Montgomery. They presented their ongoing research and clinical trials, including the groundbreaking Incyte-sponsored trial targeting the immune system in vitiligo patients.
The global nature of the vitiligo community was well-represented by speakers such as Jean-Marie Meraunt, President of the French vitiligo support group; Nunu Galot from the UK; April Sawyer, founder of Pen Pal Patch; Rick Guidotti, founder of Positive Exposure; April Star, a child model with vitiligo; Dr. Wallace Henry, III, a vitiligo activist from Washington DC; and Marilynn Burch-Harvey from Canada. Dr. Richard Huggins spoke on behalf of the Global Vitiligo Foundation about the importance of worldwide collaboration in vitiligo advocacy.
The conference received official recognition from local and national political figures. Worcester Mayor Joseph Petty proclaimed June as Vitiligo Awareness Month and June 25th as World Vitiligo Day for the city. Senator Elizabeth Warren acknowledged the event, NC's Governor issued a proclamation of June as Vitiligo Awareness Month, and Congressman Jim McGovern's representative presented Dr. Harris and Valarie Molyneaux with flags flown over the Capitol building in honor of their work. The dinner banquet, moderated by Lee Thomas, featured inspiring talks on advocacy from Nunu Galot and Vicki Tiahrt.
The final day included presentations by Ferrell Phelps, a writer and talk show host from Houston, and Yan Valle, co-founder of the WVD campaign and CEO of VR Foundation. Diane Wilkes-Tribitt of the Houston Vitiligo Awareness Movement (HVAM) and the Global Vitiligo Foundation announced the 2019 conference in Houston, Texas. Alicia Roufs concluded the event with her video "This is Me," featuring pictures of conference attendees.
To ensure global accessibility, the conference was broadcast live and recordings were made available on YouTube.
The event emphasized four key messages:
1. Vitiligo deserves serious attention as a medical condition.
2. Increased funding for vitiligo research is crucial.
3. Patients have a right to adequate coverage for proven treatments.
4. Federal and local support for patient advocacy is essential.
The success of the 2018 World Vitiligo Day conference demonstrated the vitiligo community's resilience and determination, showcasing their ability to advance understanding and treatment of the condition.
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 World <something> Day" at the UN, so we're building up our case and collaborations now.
Special recognition goes to the eight-person WVD-2018 USA tech team led by Terry Balzano, who managed the event's design, materials, and audiovisual needs. Thanks also to the UMass facilities staff, security personnel, and volunteers, including medical students and members of Dr. Harris' lab, who contributed to the event's success.
This report is based in part on the original story posted to the Vitiligo Clinic and Research Center at UMass blog by Dr. John Harris.
UPDATE: A full History of the World Vitiligo Day
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