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Showing posts from February 26, 2009

Rare Disease Day

This Saturday February 28 th is the first international Rare Diseases Day. I am not sure what will actually happen, but the day has been declared and so named to "focus attention on rare diseases as a public health issue". This is the first day that the event has been officially recognized in this country. There are also over half the states that have issued proclamations recognizing the observance. Why should I (or you) care. Well, in my case I am living with the facts and effects of a rare disease every day. My wife has a rare disease called Multiple System Atrophy, or just MSA . MSA is one of almost 7,000 diseases that are classified as officially "rare". To attain this designation the disease must affect less than 200,000 people. At this level of affliction, rare diseases do not get the medical, drug, or research attention of higher profile illnesses. However, with 7,000 different diseases, there are between 25 and 30 million people in the U.S. alone that ar