VR Foundation

   

NEWS AND UPDATES

February 17, 2012. World Vitiligo Day

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.

Get into action now

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January 17, 2012. Vitiligo World News

Vitiligo-News.com aggregator is perhaps the fastest way to find news on this disease – it takes minutes to find links to relevant stories and publications, as opposed to the hours or Google News or PubMed take. That’s one reason why our CEO watch it obsessively.

Today, the site is moving beyond its chiefly technology-driven method of finding everything about vitiligo and related diseases. It has hired a human editor to help shape the site’s content.


January 12, 2012. World's First Dedicated Vitiligo BioBank is now open

The Vitiligo BioBank aims to promote coordinated large-scale biomarker discovery and validation, facilitate the identification of susceptibility genes, environmental and lifestyle factors and etiological pathways for vitiligo, and aid the design of treatments for this rare disease.

Read more

 

It wasn't easy at all...

With shipping factors across borders in mind, we had determined how best to preserve samples at the collection point to provide the maximum downstream utility. Proteins and biomarkers in whole blood may degrade over time if plasma is not separated from the blood cells and stored at −80°C immediately.

At the same time, it is most cost-effective to send samples from collection sites in batches bi-weekly. We simulated delays in shipping or processing and established how storage conditions would affect the subsequent DNA yields.

We asked the collection site to fractionate blood by a simple centrifugation step. This leads to a plasma layer and a second layer of the red blood cell concentrate (RBCC). After fractionation, the plasma layer is stable for frozen transport.

Our literature review demonstrates and own experiments confirmed that storage and transport of the RBCC is possible for up to 2 days at 4°C, without a significant decrease in DNA yield. We also evaluated the impact of RBCC storage over sample viscosity and the downstream challenge this may pose to perform reproducible pipetting steps but found no significant adverse effect.

  

December 20, 2011. Cloud Medical Research Management: a Bio-IT Tool For Correlative Studies In Dermatology

Published in Treatment Strategies - Dermatology (ISSN 2046-7753)

Innovative medical information solutions include, among others, Personally Controlled Health Records, which enable a patient to manage a secure copy of his or her medical data, and Cloud Computing, which provides secure storage and quick analysis of large datasets. Here we present Cloud MRM bio-IT system for secure storage and cross-analysis of granulated patient data and large genomic datasets.

We describe how Cloud MRM will help to uncover correlations between molecular parameters such as single nucleotide polymorphism profile and clinical diagnosis in vitiligo, while enabling registration of all relevant medical data in support of downstream therapy development. In the recent release version 1.0 we have included a vitiligo-specific electronic health record, a database of selected genes and their polymorphisms, and data analysis tools.

Thus a transparent R&D environment is built and tested to encourage widespread collaboration of patients, researchers, and healthcare providers for expedited development of innovative, patient-focused therapies as well as to facilitate understanding of pathogenic mechanisms of vitiligo.

Yan Valle

Read full text

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December 1, 2011. Vitinomics.net redesigned

VITINOMICS.NET represents a new, collaborative approach to medical research and development where like-minded investigators and volunteers create common pools of knowledge and processes upon which new discoveries and innovations are made.

VITINOMICS is focused on a specific problem in dermatology - vitiligo. A small number of visionaries think there is an enormous opportunity for collaboration here. No one is suggesting it will be easy, but combining resources of philanthropists, government and NGO’s with top scientific minds currently offer the most hope for neglected diseases, such as vitiligo.

Vitinomics Screenshot

Visit Vitinomics for more details.

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November 2-5, 2011. Master Class on Pigmentary Disorders (Barcelona, Spain)

Dpp 001 WThe first School on Pigmentary Disorders for this year was held in Barcelona between 2 and 5 of Novemder. 35 delegates from 26 countries attended, mostly from Europe, some from Eastern Europe, and as far away as Tanzania and United States.

The welcoming plenary was opened by our Chair of the Scentific Committee Prof. Torello Lotti, then delegates from national dermatological assosciations focused on formal classes and case presentations prepared by participants.

The master class was facilitated by Prof. Jana Hercogova, the President-Elect of the EADV, who introduced materials to guide the discussions, and encouraged interaction between delegates to discuss issues and ideas. 

See program and some photos

 

November 1, 2011. Natural Antioxidants in General Medicine and in Dermatology

World Health Academy Publication House (Zurich, CH)

Authors: Prof. Torello Lotti, Prof. Jana Hercogova, Prof. Damiano Turini, Dr. Linda Tognetti,
Co-editors Dr. Victoria Barygina and Yan Valle, MSc.

"Natural Antioxidants in General Medicine and in Dermatology" represents an extraordinary and timely definitive compilation by Professors Torello M. Lotti, Jana Hercogova and Damiano Turini working closely with Linda Tognetti, Victoria Barygina and Yan Valle and many outstanding contributors to make our complex world and life within it more understandable. There are none who could do it better than the world renowned Professors Torello M. Lotti and Jana Hercogová, two preeminent dermatology professors worldwide. Prof. Lotti is past President and Secretary General of the International Society of Dermatology, past President of the Italian Society of Dermatology, former Professor and Chairman of Dermatology at the University of Florence, and now President-elect of the World Health Academy and Founding Professor and Chair plus Vice Chancellor at his innovative state-of-the-art university in Rome. Professor Jana Hercogová, the grand dame of European Dermatology, is Professor and Head of Dermatology at Charles University and incoming President of the European Academy of Dermatology and Venereology. The other editors and contributors, notables all, have worked together with Professors Lotti and Hercogová to produce an exciting new book. Lowing oxidative stress has become the byword in lifestyle change for those seeking longer, more productive living. This authoritative volume evinces the chemical, biological, and clinical aspects of antioxidants, delineating redox balance in both physiological and pathological conditions.

Preface written by Robert A. Schwartz, MD, MPH
President, World Health Academy

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October 17, 2011. Vitiligo World Map updated. See Vitiligo Prevalence in the World here

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August 13, 2011. Vitiligo World News has moved from Vitinomics to a dedicated address today. It is a first automated, algorithm-based, vitiligo-focused news aggregator. Aggregators reduce the time and effort needed to regularly check a range of websites for updates, creating a unique information space or "personal newspaper."

Visit www.Vitiligo-News.com for everything on vitiligo.

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July 10, 2011. VRF presents software solution for R&D in skin diseases, such as vitiligo or melanoma


By Yan Valle July 29, 2011 Firenze - VR Foundation released beta version of Cloud Medical Research And Management system, a bio-IT solution for discovery of correlations between multiple types of medical data for R&D activities at II European Congress of Dermatovenerology in St. Petersburg.

The Cloud MRM enables biotechnology research organizations to efficiently discover unseen correlations between clinical data and gene expression patterns while enabling registration of all relevant medical data in support of downstream development and production of therapeutic proteins for skin diseases, such as vitiligo or melanoma cancer.

The Cloud MRM may also be appealing to big pharma in obtaining aggregated, complex data sets for small-molecule R&D processes; or to biotech companies and CROs with limited resources to develop or maintain in-house R&D software.

The system provides functionalities to facilitate data and biological material handovers among researchers from different countries. Cross analysis of de-identified patient profile data along with blood test analysis, biopsy, gene polymorphysms, and also visual data such as images, MRI, CAT scans allows automated discovery of complex relationships between different parameters causing vitiligo or other skin diseases.

Cloud MRM is hosted on a secure private cloud, easily accessible via Internet through a variety of end-user devices, including iPad or Android tablets.

For further details, please email Yan@vrfoundation.org

July 10, 2011. Quick review of the Vitiligo World Symposium results


6428 Prof. Jana Hercogova And Prof. Robert SchwartzThe Symposium was a first public appearance of the VR Foundation since formal inception 6 months ago. Level of support to the formerly unknown Foundation from top scientific minds and key media person was previously unthinkable and exceeds all expectations. General public attendance was 3x times than expected (almost 400 people vs. 150 people anticipated), twice the capacity of the conference room, and by far the biggest event during 4-day Congress. Cutting edge scientific program was brilliantly presented by leading researchers, and was well received by the audience despite translation irregularities. The preceding Scientific Breakfast has laid down the roadmap for consensus on vitiligo research. Our booth was often overcrowded with practitioners hungry for information, education and immediate solutions. Dozens of practitioners and researchers from Russia / CIS inquired about participation in the Cloud MRM project. Some desperate vitiligo patients were forwarded to appropriate specialists. This level of international exposure is critically important for the Foundation, which aims to become an authoritative center on vitiligo research, to expedite research and to build bridges between isolated research groups and vitiligo patients.

 

July 7, 2011. VITILIGO WORLD SYMPOSIUM

St. Petersburg, Russia

  See detailed program and photos

 

March 1, 2011. VRF Brings International Dermatological Congress to Russia.

The VRF proudly provides General Sponsorship to the II Continental Congress of Dermatology and IV Russian Congress of Dermavenerology, to be held in St. Petersburg (Russia) on July 6-9, 2011.

The last international dermatological event of comparable scale is believed to be held in Russia over 100 years ago.

June 1, 2011. The World Is Your R&D Department

Cloud Medical Research and Management System is getting ready for beta-testing. This open platform is built to assist researchers to find unseen correlations between a great number of research parameters, while providing a convenient and secure environment for patient case management.

You are cordially invited for testing scheduled to begin next week. Your feedback is very important for us to build this truly scientific, non-profit environment. We will present design and implementation of our Cloud Medical Research and Management platform at the Congress at St. Petersburg on July 7th, 2011.

April 18, 2011. Discover Dividends Of Collective Capability. VITINOMICS.NET is launched!

Profound changes in the nature of technology, demographics, and the global economy are giving rise to powerful new models of R&D based on community, collaboration, and self-organization.

Some distinguished researchers, doctors, philanthropists, computer geeks and ordinary people linked together to find solution to vitiligo problem. The VITINOMICS is the product of several long-lasting collaborations. These participants are harnessing mass-collaboration to create an effective guide to treatment of vitiligo.

Join us in peer and participate in online survey. Your answers to quick survey will provide life-changing opportunities for yet unknown number of people, estimated at dozens of million people worldwide.

Start the survey

What’s new?

January 12, 2012. We are proud to announce opening of the world's first dedicated Vitiligo BioBank, to promote international collaboration and aid the design of novel treatments.

More



What’s coming?

The next Scientific Advisory Meeting will be held on June 9, 2012.

 

Take Part

We invite open minded investigators to participate in vitiligo research coordination. More

Volunteers: there is a number of funded projects that are looking for participants. See