Orphan diseases are rare and under-publicized, making research and funding difficult to obtain. Diseases affecting fewer than 200,000 people or common in developing countries are considered orphan diseases. Genetic diseases and rare viruses are difficult to study and treat. Governments provide financial incentives to pharmaceutical companies to research orphan diseases, and charities have banded together under the umbrella of rare disease research to obtain funding.
An orphan disease is a disease that does not attract much public attention, research or funding, typically because it is extremely rare and under-publicised. Thousands of such diseases can be found worldwide, ranging from extremely rare genetic diseases such as fatal familial insomnia to tuberculosis, which does not attract attention in industrialized nations due to low incidence of reported cases. Efforts have been made in several countries to promote research into orphan diseases, with the aim of treating people who suffer from them.
A rare disease can become an orphan disease for two reasons. First, any disease that afflicts fewer than 200,000 people is generally considered an orphan disease, because there aren’t enough patients to make research worthwhile. Diseases common in developing countries but rare or unknown in the industrialized world are also called orphan diseases, because they fail to attract the attention of major pharmaceutical companies.
Many orphan diseases are genetic in nature, which can make them very difficult to study, let alone treat. Others take the form of extremely rare viruses, unusual bacteria, or particular allergies, and can take time to diagnose and write about, then slip through the cracks for months or years until someone starts linking multiple incidences of the same condition. Researchers such as epidemiologists are often more in touch with emerging diseases than others, but they cannot draw attention to extremely rare diseases to raise awareness of the problem among the general public.
From the perspective of pharmaceutical companies, orphan disease research is a loser. Spending a serious investment of time and energy into a potential treatment for a disease that could only be sold to a limited market is simply not worth the time. Some governments have recognized this and have provided financial incentives to pharmaceutical companies that choose to research orphan diseases, in hopes of attracting more interest in developing treatments for these conditions.
Even causes that focus on a specific orphan disease have difficulty obtaining funding, because they are not publicized widely. Some charities, recognizing this, have banded together under the general umbrella of rare disease research, rather than trying to secure funding for a single disease. Donors often feel more comfortable donating to a global organization that will distribute the funds as they see fit rather than trying to donate to a multitude of causes. These organizations may also privately sponsor challenges to identify, treat, and potentially prevent or cure specific orphan diseases.
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