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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.

THERE ARE

7,000

KNOWN RARE DISEASES

IMPACTING

30 MILLION

AMERICANS

THAT EQUALS

1 in 10

PEOPLE AFFECTED

and this is the

1 PLACE

for ALL effected to come

for TOOLS,

RESOURCES,

and SUPPORT

  • 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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