Tuesday, December 10, 2013

Stiff-Person Syndrome Part 5 of 5

This year marks the 30th anniversary of NORD and the Orphan Drug Act. Passed in 1983, the Orphan Drug Act was designed to stimulate the development of products to treat rare diseases and conditions. 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. 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; a rare disease such as Stiff-Person Syndrome or SPS. In February of 2014, Shane James is planning to run 28 marathons in 28 days in Run To Live Tasmania. Starting in Burnie, heading down the east coast to Hobart, then back up on the west coast and cruising back to Burnie, runners and riders alike are welcome to join the “28 in 28 run” for any distance they wish. Shane hopes to accomplish two specific goals by this endeavor: raise awareness of Stiff-Person Syndrome or SPS and other rare disorders and raise money for a couple of non-profit agencies:

USA:  NORD, the National Organization for Rare Disorders (www.rarediseases.org)
Australia: Steve Waugh Foundation (www.stevewaughfoundation.com.au)

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