What is Rare?

Rare diseases are defined as rare when less than 250,000 Americans suffer from a specific disease.

Other Rare Disease Facts:

  • Over 7,000 rare diseases have been found.
  • 1 out of every 10 Americans will be diagnosed with Rare Disease
  • 30 percent of children with rare diseases won’t see theirh 5th birthday.
  • 35 percent of deaths in the 1st year of life are due to rare diseases.
  • 50 percent are children diagnosed.
  • Around 30 million people in the US are living with a rare disease

  • 95 percent of rare diseases don’t have FDA approved treatments.
  • 65 percent of rare diseases are associated with shorter life spans.
  • Rare diseases impact more people than cancer and AIDs combined.
  • 80 percent of rare diseases have a genetic origin
  • Rare Disease Day is celebrated the last day in February.
  • Almost all pediatric cancers are considered rare diseases.