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?
United Nations ECOSOC session
The tenth session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities (CRPD) will take place from Tuesday 13 to Thursday ...13 June 2017 10:00, UN Plaza, New York
World Vitiligo Day celebration conference in Detroit, USA
U.S. World Vitiligo Day 2017 Theme: "Step Up for Vitiligo: A Call for Truth, Hope and Change!" Reflecting the mission of the “Step Up for Vitiligo” campaign that came...23 June 2017 18:00, Detroit, Michigan, USA
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