Press Release World Vitiligo Day 2012
What is World Vitiligo Day?
All over the world on the 25th of June, vitiligo support groups raise awareness for a disease that causes more than 100 million people suffer every day, and there is no cure in sight. The mass-collaboration effort is organized by the non-profit VR Foundation. A key aim of the ongoing 25June.org public campaign is to disseminate and raise awareness about the World Vitiligo Day, and to collect 500,000 signatures under the petition to the UN Secretary General Mr. Ban Ki-Moon. This year, for the first time, World Vitiligo Day is being widely marked by activists across the globe in order to raise awareness about vitiligo and in particular efforts across Italy.
“Heal The World” - The Italian Event
More than ever before, there is a need for concerted and coordinated research efforts to overcome vitiligo! Hosted by Prof. Torello Lotti, M.D., two NGOs - VR Foundation (USA) and World Health Academy (Switzerland) dedicated to fighting vitiligo come together in an event to mark the World Vitiligo Day on June 22, three days before the official day.
Prof. Lotti opens the event to introduce the participants and highlight the importance of combating the disease that an estimated 100 million people suffer from every day. “One third of these people could have been released from suffering had there been a greater awareness about available treatment options, general skin care, environmental issues, early recognition and political will to allocate resources to much needed research.”
Dr. Yan Valle, CEO of the non-profit VR Foundation, has been key in raising awareness and calling for action in Europe and beyond. “Our mission is focused on bringing innovation, a science-based biotech approach, clinical rigor to neglected diseases,” - says Yan.
Mr. Lee Thomas, the 4x Emmy award nominee, entertainment "guru" at WJBK Fox 2 Detroit is the most known vitiligo spokesperson from the United States. He has turned from black to white over several years, almost like the pop-star Michael Jackson, a long-time vitiligo sufferer, who passed on June 25th in 2009. And Mr. Jackson was not alone. Vitiligo causes skin to lose pigment in irregular shaped patches, and it affects all nationalities, ages and genders, every level of social strata. One can find them in schools, hospitals, on TV and movies screens, sport arenas, and churches, while many went into seclusion and voluntary isolation from society.
Mrs. Ogo Maduewesi, founder of VITSAF patient association from Nigeria, is holding a synchronous press-event for West African media in Lagos. She emphasizes the importance of raising awareness about vitiligo via “engaging, informing, and prompting action.” She speaks about the resolution of the global vitiligo community, which calls on the World Health Organization, the United Nation and Member States to “promote public awareness, … combat this neglected disease and expedite therapy development.“
The VR Foundation aims at gaining support from the national Health Ministries or national Electronic Health Registries in order to conduct longitudinal and population-based studies of this neglected disease in various regions. This would help to collect a rich data necessary for a deep computer analysis and downstream therapy development.
These presentations set the scene for an upcoming event in Kitzbühel (Austria) on December 12, 2012, where the brightest minds from different fields of science will get together to discuss the vitiligo problem. It is the first collaboration event of its kind in neglected diseases, with participation of three Nobel Prize winners.
Drawing attention to the winter event, Mr. Michele Galantino, President of Planning Congressi s.r.l., leads into an introduction to the World Health Academy, under the leadership of Prof. Robert A. Schwartz (New Jersey, USA). This Swiss-based foundation is providing leadership on global health matters, facilitating a platform for continuing medical education, and building on political will of the European member states.
The World Vitiligo campaign will be run online until next June, with press-conference and activities amongst the vitiligo leagues across all continents, re-initiated by the VR Foundation and participating patient support groups at the end of May 2013.
For more information about VR Foundation, World Vitiligo Day or general inquiries please contact:
Alessandra Fabbri Palmieri
Secretariat and External Relations
VITILIGO RESEARCH FOUNDATION
ITALIAN OFFICE Via Vittoria Colonna, 11 - Rome
Alessandra Fabbri Palmieri
Mobile +39 328 6214588
I support the petition to designate June 25 as Vitiligo World Day and save millions of people worldwide from social isolation and persecution.
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