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A rare disease is defined as any illness

condition, syndrome, disease, or disorder

affecting fewer than 200,000 people in the U.S.

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THERE ARE

7,000

KNOWN RARE DISEASES

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IMPACTING

30 MILLION

AMERICANS

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THAT EQUALS

1 in 10

PEOPLE AFFECTED

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and this is the

1 PLACE

for ALL effected to come

for TOOLS,

RESOURCES,

and SUPPORT

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  • Rare Disease: Any disease, disorder, illness or condition affecting fewer than 200,000 people in the United States is considered rare. 1
  • There are approximately 7,000 rare diseases. 2
  • Most rare diseases are genetic or have a genetic component. 3
  • It’s estimated that 25-30 million Americans (almost 1 in 10) have rare diseases. 7
  • More than 90% of rare diseases are without an FDA-approved treatment. 9
  • For many rare diseases, signs may be observed at birth or in childhood. 5
  • Many rare diseases result in premature deaths of infants and young children, or are fatal in early childhood. 4
  • There are more than 500 types of rare cancers. 6
  • All pediatric cancers are rare. 8

*Download the fact sheet for resources*

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