Rare Diseases

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A rare disease is defined in the United States as a diesease that affects less than 200,000 people.  There are currently about 7000 identified rare diseases affecting 30 million Americans.

Some rare disease facts:
  • A disease is considered rare when less than 200,000 people have it.
  • There are 7,000 rare diseases with more being discovered.
  • About 30 million Americans, or 1 in 10, have a rare disease.
  • Approximately 50% of those affected with a rare disease are children.
  • 30% of children with a rare disease die before their 5th birthday.
  • Around half of rare diseases do not have a specific foundation advocating for support or research
  • Because so few people have a particular rare disease, most do not have any disease specific research or treatments.

Resources: