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dedicated to fast tracking vitiligo research


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VI Vitiligo Master-Class

Vitiligo master-class in Croatia

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Opening ceremony by Professors Mirna Šitum and Torello Lotti was complimented by a performance of traditional Croatian music. Prof. Andreas Katsambas (left in the photo) from Greece will later discuss relationship between skin cancer and vitiligo. Recent studies showed that patients with vitiligo have a decreased risk of melanoma and non-melanoma skin cancers.

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Master Class president Professor Mirna Šitum is making an overview and update on pigmentary disorders, – an aetiologically complex part of general and corrective dermatology, requiring interdisciplinary approach in diagnosis and treatment. Although most pigmentary disorders are benign in nature, they present clinical, cosmetic and psychological challenges to both patient and doctor.

An excellent presentation of Vitiligo Treatment Guidelines was offered by Prof. Andrija Stanimirovic, Vice-president of the Master Class and President of Croatian Vitiligo Association. Prof. Stanimirovic reviewed five treatment algorithms suggested by American, British, European and Japanese vitiligo specialists, and shared guidelines from Croatia that were introduced by his team in 2014.

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An award winner of the 1st Master Class in Spain (2011) Dr. Natasa Teovska Mitrevska from Macedonia presents her study of Quality Of Life in vitiligo patients. Measuring the QoL is important for assessment of full impact of skin disorders on person’s life, making decisions about non-clinical aspects of the disease, improving doctor-patient relationship and overall compliance thus resulting in better treatment outcomes.

Psychological aspects of vitiligo were also reviewed by Prof. Jacek C. Szepietowski from Wroclaw Medical University, who suggest that benefits of adjunctive psychological support should always be taken into consideration in holistic approach to the therapy of vitiligo patients. Practical advices on vitiligo care in everyday use by Prof. Igor Bartenjev from Ljubljana School of Medicine (Slovenia) cover all steps, from first-line treatments to depigmentation.

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Prof. Torello Lotti, Chair of the VRF Board and Chair of Department of Dermatology of G.Marconi University in Rome, is leading the session on vitiligo treatments (photo). In a presentation “Vitiligo: What’s New, What’s True in 2015” professor reviewed UVB and microphotherapy, topical treatments, use of products based on prostaglandin E and antioxidants. Low-dose oral cytokines therapy for vitiligo is aimed at improving the stimulation of the residual population of melanocytes, and is a very promising new therapeutic approach to vitiligo treatment.

In differential diagnosis of vitiligo it is important, according to Dr. Neira Purina-Ivic from University of Split School Of Medicine, to distinguish early lesions with partial loss of pigment from post-inflammatory hypopigmentation and other cutaneous infections. A leader of Croatian Vitiligo Association, Dr. Maja Kovacevic presented patient case reports, including rare clinical variants of the disease with mixed form of vitiligo following Blaschko’s lines, multi-chrome and blue vitiligo. Phototherapy and excimer laser treatment options for vitiligo were summarized by Dr. Kresimir Kostovic from University Hospital Center in Zagreb. Mutual factors affecting vitiligo and hyper pigmentation disorders were reviewed by Dr. Ivana Binic from Nis, Serbia, for a better understanding of their etiopathogenesis and all complex interactions between regulators of the melanogenesis process.

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Patients joined the Master Class for vitiligo camouflage product demonstration by Dr. Joelle Nonni from France. The three-step technique of the medical corrective make-up helps patients restore confidence in their skin appearance.

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Dr. Igor Korobko, VRF Chief Scientific Director, and Dr. Verdana Bulat (University Hospital Center “Sestre miloserdnice” from Zagreb, Croatia) discussing a future research project. Despite obvious clinical differences, vitiligo and other non/cutaneous diseases share many important similarities that may help us to better understand their immunopathogenesis and develop new treatments.

A novel topical cream for selective phototherapy using sunlight was introduced by it’s developer, Prof. Andy Goren (Applied Biology, USA). The cream’s unique formula filters out non-therapeutic wavelength of UVB from sunlight and delivers treatment for acrofacial vitiligo. It can provide a convenient alternative to clinic-based phototherapy, especially for those traveling or living in sun-abundant places like south of Europe, India and other regions.

A dedicated bio-IT system ‘Vitiligo Cloud Bank’ was developed by the VR Foundation for use by patients, doctors and researchers. Foundation’s CEO Yan Valle demonstrated features and invited those interested to sign up for free use of this handy tool.

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VRF CEO Yan Valle and Nicolle Maquignon from Association Française du Vitiligo discussing collaboration between their non-profit organizations and potential creation of Federation of Vitiligo Societies.

– See more at: http://vrfoundation.org/doctors-page–4/master-classes/vi-master-class-in-split-croatia/vi-master-class-report-and-photos#sthash.90BXXrKu.dpuf


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VRF Newsletter

This month, I have a few warnings for you, as well as good news about a new treatment, and some interesting announcements.

With summer approaching, you will no doubt be slapping on the sunscreen. However, please be careful as studies have shown that some sunscreen chemicals, including octyl methoxycinnamate (also called OMC), 4-methylbenzylidene camphor and benzophenone 3, could potentially disrupt your developmental, reproductive and endocrine systems. Be sure to check labels before you buy and choose sunscreens with physical blockers, such as zinc oxide or titanium dioxide.

I also have a warning about diet for you. Research in Europe has shown that sudden dietary changes, such as switching to a vegetarian diet or excessive drinking, may trigger or worsen vitiligo in genetically pre-disposed people. A gluten-free diet, however, has no direct effect on vitiligo.

Let me also expand on a warning from last month’s newsletter about dietary supplements, including Gingko Biloba, that have been found not to contain the DNA of the plants listed on the labels. Now, a new study reveals that many weight loss and fitness supplements contain a potentially dangerous ingredient, similar to amphetamine. To stay safe, avoid buying anything that contains the chemical BMPEA, often labeled as Acacia rigidula. 

Enough warnings, now for some positive news! The patent on a Polypodium Leucotomos, plant extract derived from types of South American fern, has just expired. This opens up the market for new products for vitiligo based on healing powers of the nature, coming soon. Indigenous people of rainforest have long used the plants to treat and alleviate symptoms of vitiligo and other autoimmune disorders. You can read more in our FAQ section.

To finish this month, I have two short announcements:

Firstly, the campaign headquarters for World Vitiligo Day 2016 will be in Prague, the beautiful capital of the Czech Republic, and a leading candidate to host the World Dermatology Congress in 2019. This year’s headquarters are in China, under the presidency of Prof. Xing Hua Gao, Chairman of Department of Dermatology, No.1 Hospital of China Medical University.

Secondly, at the Vitiligo Research Foundation we are stepping up our collaboration with Vitiligo Support International. Greater interaction between the VRF and VSI is good news for patients, doctors and researchers everywhere.

Lastly, if you have a free evening today and live nearby, check out these two events: Vitiligo Karaoke Night in New York and Born To Rise – Launch Event in Canada.

With my best wishes. 

Sincerely, 

Yan


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vitiligo support meeting at the AAD annual meeting in San Francisco.

Yan Valle, VR Foundation CEO and Jackie Gardner, Executive Director of Vitiligo Support International, have discussed the current state of vitiligo affairs and collaboration at the AAD Annual Meeting in San Francisco. 

Vitiligo patients, physicians, researchers all need better outcomes. Getting to better outcomes doesn’t necessarily mean better drugs, but rather it means better patient-centered measures to enhance research and treatment. “Outcomes measures don’t take into account all aspects of vitiligo, they need distinguishing which treatments and doctors add extra value,” says Jackie Gardner. “While there has been dramatic progress in vitiligo research, gaps remain. Key questions include the ability to predict who will develop vitiligo, and the ability to predict which patients will respond to which therapies,” says Yan Valle. Vitiligo non-treatment, under-treatment, and treatment dissatisfaction remain a significant problem in the United States and worldwide. Setting a clear target, like % of re-pigmentation as a result of the treatment, seems like a simple task, but the reality is far more complex. Multiple stakeholders in vitiligo — patients, doctors, researchers, and insurance companies — all have their own goals, priorities, and questions of interest. VR Foundation and VSI will continue bridging stockholder’s interests and mutual collaboration in order to achieve  better outcomes in vitiligo.

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VRF March newsletter

I’m starting this newsletter with two important announcements. Firstly, if you are taking Gingko Biloba supplements – often prescribed to vitiligo sufferers – then please be careful. A recent investigation by the New York State Attorney General has found that as many as a 45% of herbal supplements tested did not contain the plants listed on their labels and used cheap fillers instead. In the study, nine of the tests on Gingko Biloba supplements revealed no Gingko Biloba plant DNA. You can read more about it in the New York Times .

My second announcement is a happier one. You have a chance to appear in a photo-shoot for a new cosmetic brand designed to improve skin appearance. Casting for the shoot is taking place later this month in Brooklyn, click here for more details. This is great news for all vitiligans as it means the new brand – which we have been helping to develop and test – will soon hit the market.

Next, I have some good news for doctors. We have eight vitiligo master-classes lined up for vitiligo specialists and physicians, taking place in the US, Israel, Croatia, China, Iran, Bulgaria, Georgia and Kazakhstan. Each one provides the opportunity to keep up to date with best management practices in vitiligo and pigmentary disorders. Attending also allows you to earn CME credits and gives you the chance to publish relevant papers in the Journal Of Pigmentary Disorders for free. 

I also have good news for researchers, as our quarterly review of research papers is now available via our website. Fifty-one papers have been reviewed this quarter and you can download it all for free by clicking here.

Finally, I have good news for everyone! The Indian Association of Dermatologists, Venereologists and Leprologists (IADVL) has agreed to change the date of its own Vitiligo Day to June 25th, so it now joins forces with World Vitiligo Day. This makes WVD bigger and better than ever and strengthens our mission to have June 25th officially recognised by the UN as World Vitiligo Day. This year, the WVD campaign president is Prof. Xing-Hua Gao, Chairman of the Department of Dermatology, No.1 Hospital of China Medical University in Shenyang, who is busy ensuring the 2015 event is one to remember.

If you haven’t already done so, you can do your own bit for World Vitiligo Day by signing the petition to the UN Secretary General.

With my best wishes. 

Sincerely, 

Yan

CEO VRF


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Warning for Gingko Biloba users

Four major retailers in the US accused of selling fraudulent and potentially dangerous herbal supplements, including Gingko Biloba often prescribed to vitiligo patients. Investigation by New York State attorney general found that as many as a 45% of herbal supplements tested did not contain the plants listed on their labels — only cheap fillers instead. In the study, nine of the tests revealed no Gingko Biloba plant DNA but only allium, rice, spruce, and asparagaceae. Read the full story in the New York Times.

Warning Gingko Biloba Vitiligo

– See more at: http://vrfoundation.org/announcements/134#sthash.z3weodOm.dpuf


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New psychology research trial announced

A new research trial entitled: ‘Compassion-focused self-help for psychological distress associated with skin conditions’ is being undertaken. It is aimed at adults (16+) with vitiligo or other skin conditions, who would like to learn a self-help technique to help manage the stress associated with their condition.

The intervention lasts for 2 weeks and is comprised of psychoeducation, instructions for a mindful breathing practice, and an accompanying audio guide. It has been developed in collaboration with the Compassionate Mind Foundation (http://www.compassionatemind.co.uk/), and has been found to improve skin related quality of life in a previous study of psoriasis patients.

The trial has received ethical approval through the Department of Psychology Ethics Committee at the University of Sheffield.


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VRF news

I’m excited about 2015! We are starting the New Year with new subscribers and research collaborations around the world. 
 
As we head into this year, I will continue to be focused on VR Foundation initiatives that fulfill our mission: to accelerate the end of suffering for millions of people who suffer from vitiligo through research, support and education. 
 
I hope you had a chance to learn about our Vitiligo CloudBank system and set up your own, fully anonymous, vitiligo health record. If you hadn’t do so yet, please help us to help you and the millions of other vitiligo sufferers across the world and join the CloudBank today.

Soon, we will open access for academic researchers to the clinical data contained in the Vitiligo CloudBank in order to gain a better understanding of the disease, to study environmental factors that may cause vitiligo and ultimately, to develop new therapies. This is an important part of why we started the CloudBank in the first place – to make sure we empower ourselves and empower others. 
 
I’m excited about the possibility of new discoveries coming out of our collective data for research. I also believe it’s important that all data in Vitiligo CloudBank is fully anonymous for your peace of mind.
This June 25, we are planning a celebration that demonstrates the power and potential of vitiligans around the world. Campaign headquarters will move from Chandigarh (India) to Shenyang (China) this year. World Vitiligo Day campaign is short of only few thousand signatures of the total half a million goal mark. You can help us by inviting friends and family to our petition to the UN Secretary-General on 25june.org.
 
I would love to hear from you about how the VRF has impacted your life. Share your thoughts and drop us a line via email or Facebook. 
 
With my best wishes for 2015. 
 
Sincerely, 
 
Yan 
CEO
VRFoundaton


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VRF turning to crowdfunding to raise funds for vitiligo research and support.


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IXth Vitiligo Masterclass starts today.

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As a part of our ongoing drive to sort the latest information on vitiligo management a treatment,  we are travelling the globe and bringing together the top experts on vitiligo.
today and tomorrow in Amrita,  India, the ninth vitiligo masterclass is underway.