What To Do After You’ve Been Diagnosed With A Rare Disease

Rare diseases, also called ‘orphan diseases’ are diseases that affect only a small number of people in the population at any one time.  In the US, a disease is classified as ‘rare’ if it affects fewer than 200,000 people in a given time period, and in Europe if it affects less than one in 2,000.  There are approximately 6,800 such diseases according to the National Institutes of Health (NIH).

Because most rare diseases can cause changes requiring major lifestyle modification (depending on the severity and prognosis), there are several steps you can take to find a solution or to help you cope better with your new situation.

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