How We Work
We are a small organization with a big reach. From our New York office we manage an international program of clinical and academic research and outreach projects, all centered on finding a cure for vitiligo and helping those with the disease.
We believe that to make a real difference we need to do things differently from the way disease research is currently conducted.
These are the types of problems we want to avoid:
- Poor communication within the research community. Competition between scientists for funding and publications severely limits opportunities for coordination and collaboration.
- Lack of specialization. Research scientists specialize by scientific discipline (i.e. genetics, immunology, etc.) and seek funding by relating this discipline to the disease, rather than specializing by disease.
- Experiments designed to answer a hypothesis rather than address a specific problem relative to treatment of a disease.
- Lack of a research roadmap. When there is no overall strategy for research into a disease, investigators all too often pursue experiments based solely on their own scientific interests, leading to a lack of cohesion.
- Lack of intellectual property protection. Biopharma companies are investing in "patentable" solutions, but scientific discoveries often lack patent protection needed for their commercial exploitation.
- We monitor everything that is happening in the vitiligo field across the world. We monitor academic research, clinical practice, trials, products - from traditional medicine to the pharmaceutical pipeline - as well as social events and support activities.
- We develop and fund the most promising research programs. We channel resources to the world’s top scientific minds—cutting red tape and encouraging collaboration, to speed breakthroughs.
- We support outreach programs across the world that educate and inform people about vitiligo. These include master-classes for doctors, collaboration programs and World Vitiligo Day.
I support the petition to designate June 25 as Vitiligo World Day and save millions of people worldwide from social isolation and persecution.
What is coming?
NY Vitiligo Community Meeting in September
Our next meeting will be on Thursday, September 21st, at 7PM - 8:30PM on the 11th floor of NYU's Ambulatory Care Center at 240 East 38th Street, between 2nd and 3rd Av...21 September 2017 19:00, 11th floor of NYU's Ambulatory Car...
Vitiligo Advocacy Day at the US Capitol
Save-the-Date for the much anticipated Vitiligo Advocacy Day at the United States Capitol this fall. As many of you know, the Advocacy Committee of the Global Vitilig...04 October 2017 10:00, Washington, DC
Can Scenesse be used for vitiligo treatment?
The drug Scenesse from Clinuvel has been tested in clinical trials in relation vitiligo. Profs. Henry Lim, Mark Lebwohl and coauthors reported (PubMed) results of mult...
I have a new job - should I tell colleagues about my vitiligo?
If you are starting a new job and you are concerned about stares and questions about your skin, try a proactive approach. When the time is right and you are feeling co...
Can a gluten-free diet help with vitiligo?
Gluten is the spongy complex of proteins found in wheat, rye and barley, which puffs up when baked with yeast. It is important to realize there are three different...
How long does it take to treat vitiligo?
Treatment results will vary by person and type of vitiligo. The rule of thumb is that you will need to allow at least 3 to 6 months before you begin to see results fro...