The Vitiligo Research Foundation (VRF) is a New York-based 501(c)3 non-profit organization focused on the skin disease Vitiligo.
Contents
History
The Vitiligo Research Foundation was founded in 2010 by Russian entrepreneur Dmitry Aksenov, whose daughter suffers from vitiligo, after he found that there was a lack of quality research into the disease.
The VRF is managed by a small team of permanent staff. They are assisted by a Board of Directors chaired by Professor Torello Lotti (Professor of the Dermatology Division at University of Rome “Guglielmo Marconi”. A Scientific Advisory Board advises on scientific issues, while a Public Advisory Board that includes members such as reporter and author Lee Thomas, advises on aspects of living with vitiligo and how best to support those affected by the condition. The members of all three Boards are volunteers.
The VRF receives no funding from government or the pharmaceutical industry and is entirely reliant on public donations.
Main initiatives
Initiatives instigated and/or supported by the VRF:
Vitiligo BioBank
The Vitiligo BioBank is a federated network of biobanks in nine different countries that store genetic material and health records from both vitiligo patients and their unaffected relatives. All participating biobanks share common Standard Operating Procedures, as well as a standardized data set (Vitiligo Patient Record) developed by the VRF. Bio samples are collected and stored locally, while accompanying anonymous clinical records are stored in the Vitiligo CloudBank.
Vitiligo CloudBank
The Vitiligo Cloudbank is a secure online system that holds information on vitiligo patients from across the world. This includes vitiligo patient records, laboratory analysis data and, in some cases, associated genomic data. In 2014, the VRF also invited patients to use CloudBank as a personal vitiligo health record while participating anonymously in collaborative research.
World Vitiligo Day
The VRF sponsors and promotes June 25 as World Vitiligo Day – a date where people across the world come together to increase awareness of vitiligo, fight prejudice and raise funds for research, support and education. Signatures are currently being collected through 25June.org to petition the UN Secretary General to officially designate the date as World Vitiligo Day.
World Vitiligo Map
The World Vitiligo Map is an international directory that provides global information on vitiligo research centers, patient support groups and healthcare providers experienced in treating vitiligo and supporting sufferers. It is free to use and, in general, the medical professionals who appear in the directory are not affiliated with the VRF.
Vitiligo Crowdfunding
In late 2014, the VRF introduced an innovative approach to research funding by setting up a crowdfunding scheme for selected research projects. This allows supporters to donate directly to vitiligo research projects and programs that are typically too small to apply for a grant but too big to be funded directly from the VRF budget.