Orphan diseases are the diseases those affect a very less number of people (say 100-5000 person in a country).
Generally, pharmaceutical companies spend few billion dollars to conduct pre-clinical (using animals) and clinical (using healthy human and patients) research for develop a new medicine. Drug development generally take about 10 years. Before approving any new medicine for marketing, food and drug administration review all experimental data to confirm that medicine is safe and effective in managing/curing a disease. Generally pharmaceutical companies obtain patent (say for 10-20 years) to sale the a new medicine (and other companies can not sell same medicine till patent expires) as per patent agreement) for recovering research cost.
In case of developing orphan drugs (the medicine used to treat orphan disease) pharmaceutical companies have difficulty to conduct extensive research that requires lot of money and they may not get back money from few patients those use these medicine. Therefore US government passed orphan drug act in 1983 to relax few stringent criteria set to develop new medicine. Even though this effort decreases financial burden for pharmaceutical companies and few pharmaceutical companies are committed to develop medicine are orphan diseases, these efforts are not enough because the number of orphan diseases are increases every year.
To void this gap, researchers at academic institutes are conducting research to develop new medicine. As research grants from National Institute of Health (NIH) and National Science Foundation (NSF) declined and became competitive, researchers from academic institutes and small pharma/biotech companies had been looking for alternative source of funding.
BeneFunder, is an nonprofit organization which is raising money from wealthy Americans to fund for drug development for rare diseases apart from research on environment and computer science. Founders of this philanthropic research funding platform realized that Americans donate 10 times more than grants issued by NIH for scientific research. Therefore the founders developed this organization to collect donation for research and donation to this organization is exempted from tax. Professor Gert Lanckrit, Ph.D., department of Computer Science and Engineering, University of California, San Diego co-founded BeneFunder. Dr. Lanckrit spoke about his experience at 1st Rare disease conference at University of California, Davis on March 5, 2015. Professor Lanckrit told that they invited financial adviser (from financial institutes like Merrill Lynch) to visit different research lab working on innovative product. Informed financial adviser than help donors to decide in which research their money should be spent. Few donors also visit research lab to learn about latent technologies available to fight orphan disease and meet patients of orphan diseases to realize how their donations are improving life of patients. BeneFunder has employees who develop easy and attractive tools to teach financial adviser and donors.
