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Rare-Disease-Resources

Rare-disease resources

Information and organizations to help you on your rare-disease journey.
Rare-Disease-Resources

Rare-Disease Facts

  • A rare disease is any disease, disorder, or condition affecting fewer than 200,000 (U.S.)
  • There may be as many as 7,000 rare diseases 
  • Rare disease impacts more people than cancer and AIDS combined
  • 400 million people have a rare disease worldwide (greater than the population of the U.S.)
  • 25-30 million Americans are living with a rare disease, that’s 1 in 10 Americans 
  • 80% of rare diseases are genetic
  • 70% of those genetic rare diseases start in childhood 
  • 1 in 2 patients diagnosed with a rare disease is a child, that’s 15 million U.S. children
  • For many rare diseases, signs may be observed at birth or in childhood
  • All pediatric cancers are rare
  • 95% of rare diseases lack an FDA approved treatment
  • 50% of rare diseases don’t have a foundation or research group 

Source: “Rare Facts,” Globalgenes.com, 2019, https://globalgenes.org/rare-facts/ , “Rare-Disease Facts,” Rarediseases.org, https://rarediseases.org/wp-content/uploads/2019/02/nord-rareinsights-rd-facts-2019.pdf

Rare-Disease Organizations

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