Friday, February 28, 2014
Rare Disease Day
Today, February 28, 2014, is Rare Disease Day. What is considered a rare disease? Well, by comparison, for drugs, a disease or condition is considered rare if it affects less than 200,000 persons in the United States. For medical devices, a disease or condition is considered rare when it occurs so infrequently in the US that there is no reasonable expectation that a medical device for such disease or condition will be developed without assistance. For rare diseases, according to the National Institutes of Health there are about 6,800 rare diseases and conditions. In total, nearly 30 million Americans (maybe one in ten) suffer from at least one rare disease. Stiff-Person Syndrome or SPS is one of those rare diseases. Last year, after meeting Shane James who was diagnosed with SPS in 2007, I devoted several blogs to increasing awareness of this syndrome. You can find out additional information through NORD, the National Organization for Rare Disorders (www.rarediseases.org) in the USA, and the Steve Waugh Foundation (www.stevewaughfoundation.com.au) in Australia.