What is a rare disease?

In the United States, a disease is considered rare if it is affects fewer than 200,000 Americans. In Europe, a rare disease is defined as having an incidence of 1 in 2,000 people.  The term “rare disease” was coined in the ’90’s when Congress enacted the Orphan Drug act which incentivized drug companies to create treatments for diseases which affect only a small percentage of the population.

How many people have rare diseases?
About 1 in 10 Americans have a rare disease. Chances are good that you or a family member has a condition listed on the “rare disease” list.

What’s an example of a rare disease?
Rare diseases can affect any system in the body, and can be present at birth or develop at any time.   Dengue Fever, for example, is infective and is spread by mosquitos in tropical regions.  Cancers, such as leukemia, ovarian or  kidney are rare diseases.  Some rare diseases are chromosomal, like Turner Syndrome.  Interestingly, trisomy 21, or Down Syndrome, isn’t rare as there are millions of Americans with this genetic difference.

How many rare diseases are there? There are more than 7,000 rare diseases, according to the National Institutes of Health (NIH). The National Institute of Health runs an exhaustive database called Genetic and Rare Diseases Information Center (GARD).

Why do Rare Diseases matter?  Having a Rare Disease doesn’t mean that a person is necessarily “sick”.  The disease may have very little impact on quality of life. But some rare diseases are devastating, costly or painful.   Finding a cure or treatment for a rare disease may be difficult due to limited research dollars.

How can I help? You can help by raising awareness of rare diseases, lobbying your legislators, or reaching out to someone who has a rare disease.  It can be lonely and discouraging to have a rare disease. Being aware of rare diseases will help people who are affected feel less alone.

To learn more about rare diseases:
The National Organization of Rare Disorders
Genetic and Rare Diseases Information Center
 Rare Disease Day Fact Sheet: nord-rddus-2017-fact-sheetnord-rddus-2017-fact-sheet


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