SAB NewsHow Rare is Rare?Posted 6/21/2004 The Science Advisory Board polled almost 500 individuals as to what percentage of the population would typically need to be affected with a disease in order for it to be classified as rare. Almost half of the participants in the Instant Poll selected 0.01% of the total population as their answer choice. Actually, the correct answer is 0.05%, which was selected by 25% of the poll’s respondents. Hence, many biomedical professionals were underestimating the prevalence of this disease family by five-fold. There are approximately 6,000 diseases that are categorized as rare. These include familiar diseases such as cystic fibrosis, Lou Gehrig's disease, and Tourette's syndrome as well as those that are unfamiliar such as Hamburger disease, Job syndrome, and acromegaly. However, all of these diseases are life-threatening and/or chronically debilitating. |
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