Over 100 million of people suffer from this skin disease daily, but there is no cure in sight. With focus on collaboration efforts, we can bring that number closer to zero. Take action today and urge the UN Secretary-General to prioritize multilateral efforts in healthcare and education for this neglected disease.
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WHAT IS “25JUNE” INITIATIVE?
It is amazing that there are only few people, outside medical professionals and those who suffered with this disease, have heard about the term “vitiligo”.
The 25June Initiative aims to increase awareness of vitiligo and raise funds for research, national vitiligo associations and support groups. Led by the VR Foundation, this year’s goal is to mark World Vitiligo Day on June 25 a date to be observed annually by the United Nations.
Longer term the 25June Initiative aims to generate knowledge of vitiligo, its appropriate care, arrest and treatment methods amongst the general public, health care providers, and governments.
2012 Goals. This year we aim to raise 500,000 signatures to address the United Nations in order to:
- Recognize this neglected and debilitating disease associated with severe social complications;
- Recognize the urgent need to pursue multilateral efforts in therapy development and health-care education;
- Designate June 25 as the World Vitiligo Day to be observed by the United Nations and Member States every year.
Recognition is the first step for the prevention, better treatment and care of vitiligo in line with the sustainable development of national health-care systems.
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PETITION LETTER
"Dear Secretary-General,
Hear us as we speak with one voice about human rights, healthcare and education. We, the undersigned, are just the few of estimated over 100 million people living, working, taking care of children across the world with this neglected disease, vitiligo.
We contribute to every single industry and culture in the world. We are the rich and the poor. We are the face of the entire all neglected disease community. You find us in schools, hospitals, on TV and movies screens, sport arenas, and churches, while many went into seclusion and voluntary isolation from society.
Although vitiligo daily has destroyed the lives of millions of individuals since recorded history, predominantly in the developing world, there is no cure in sight. But few diseases give rise to more fear and loathing than vitiligo, especially in dark-skinned people, in whom it can be strikingly prominent. And because it is not contagious or life-threatening, we often receive no support whatsoever from our national healthcare systems.
Thus, I support the initiative 25June and respectfully require the United Nations to
1. Urgently pursue multilateral efforts in vitiligo healthcare and education, and to
2. Designate June 25 as the World Vitiligo Day.
Mr. Secretary-General, please hear our voice. We know you can encourage Member States to respect our rights. Please pursue policies supportive of neglected disease collaboration, vitiligo in particular. This is central to the human rights and personal dignity of millions of women, men and children on this Earth.
Yours in health and freedom,
[sender]"
Please sign the Petition
. (A new window will open. If it does not open in few seconds, please type the address www.25June.org in your browser.)
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WHY IS IT IMPORTANT
There are a lot of people who don't want you to stand up for your rights and demand a cure. They say vitiligo is not life threatening and not contagious, and you must embrace a life of a pariah, hiding yourself from sunlight and from the society.
Vitiligo is an under-researched disease resulting in milky white skin patches on the skin. The breadth and complexity of the disease require international collaboration in therapy development. The severity of the disease calls for national healthcare support.
So, speak up for your condition and your rights. Sign the letter to tell the UN Secretary-General that you want recognition and support. It would be appreciated if you could give every member of your family or group an opportunity for signing.
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SUPPORT THE INITIATIVE
The 25June Initiative works with patient support groups, health care professionals and researchers to register vitiligo incidence at the local level. We are commencing the first global vitiligo prevalence study, aiming to better identify the number of vitiligo patients globally.
We invite health system officials, family doctors and clinic practitioners to report to us the number of patient cases with vitiligo, including number of their affected relatives. Please email your report along with your name, national license number or clinic name, and your city name to report@25june.org.
We invite open minded investigators to participate in vitiligo research collaboration. To make the global vitiligo R&D more effective, please email us or visit Vitinomics.net
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IDEAS AND ACTIVITIES
There are a lot of action ideas that can be pursued by individuals worldwide on June 25th. First, let us begin by referring people to the website www.25June.org to sign a petition and take part in the online survey.
One can generate multiple announcements on podcast, radio or television stressing the importance of World Vitiligo Day, enlightening the people globally about the connotations of white spots on the skin and vitiligo itself. Additionally, one can set up a Facebook page to assist those with unsightly white patches to recognize that their state is well controllable and not a permanent illness. One can enhance the confidence and quality-of-life for those with vitiligo by encouraging their understanding of the disease, emphasizing positives. Since local community attitudes tend to be imprecise, educations about vitiligo becomes paramount, both to alleviate anxiety and to expedite treatment development.
