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Subscribe to this list via RSS Blog posts tagged in Marfan Syndrome

Many people live with a constellation of symptoms that make up a rare disease that is difficult to diagnose, because it is just that—rare.

160531RareDiseases-325In the United States, the National Institutes of Health (NIH) considers a disease rare if there are fewer than 200,000 individuals affected. For reference, there are nearly 80 million people with high blood pressure in the U.S.

These patients often go from provider to provider seeking an answer to their health problems. In fact, most patients see up to eight different providers before getting a diagnosis, delaying treatment. It can sometimes take seven or more years to get an accurate diagnosis, if ever. Some diseases haven't even been named; they are known as SWAN, or Symptoms Without a Name.

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