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- rarediseases.info.nih.gov
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A rare disease is a disease or condition that impacts fewer than 200,000 people in the U.S. There are more than 10,000 known rare diseases that affect about 1 in 10 people (or 30 million people) in the U.S., according to the Orphan Drug Act .
- www.who.int
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Rare diseases are distributed across different chapters following a primarily clinical approach. The main code is selected according to the most severe system involvement or the specialist most likely to be relied on to manage the disease.
How rare is rare? In the United States, the Food and Drug Administration (FDA) defines a rare disease as any disease that affects fewer than 200,000 Americans. In Europe, a disease is defined as rare when it affects less than 1 in 2,000 people.
Genetic and Rare Diseases Information Center. Did you know there are over 10,000 rare diseases? In fact, rare diseases are estimated to affect more than 30 million people in the United States. Each disease may be rare individually, but people with rare diseases often face similar challenges.
A rare disease is a disease that affects a small percentage of the population but there is no single accepted definition. The European Union and United Kingdom define a disease as rare if it affects fewer than 1 in 2,000 people, but there is no universal definition.
To have a rare disease is often to have a condition that goes undiagnosed for years while concerned physicians who have never seen the condition before may offer one diagnosis and then search for another when new or advancing symptoms belie the original diagnosis.
Although most of the conditions just cited affect tens of thousands of Americans, each meets the definition of rare disease established in a 1984 amendment to the 1983 Orphan Drug Act ( P.L. 97-414 ): a disease or condition that affects fewer than 200,000 people in the United States (21 USC 360bb).
