Rare disease facts and figures

Although rare and genetic diseases, and many times the symptoms, are uncommon to most doctors, rare diseases as a whole represent a large medical challenge. Combine this with the lack of financial or market incentives to treat or cure rare diseases, and you have a serious public health problem.

Did you know that

  • There are approximately 7000 different types of rare diseases and disorders, with more being discovered each day.
  • If all the people with rare diseases lived in one country, it would be the world's 3rd most populous country.
  • In the United States, a condition is considered "rare" if it affects fewer than 200,000 people, in the United Kingdom a disease is considered rare if it affects fewer than 50,000 citizens per disease.  
  • 80% of rare diseases are genetic in origin and thus are present throughout a person's life even if the symptoms do not immediately appear.
  • Approximately 50% of the people affected by rare diseases are children.
  • 30% of children with a rare disease will not live to see their 5th Birthday.
  • According to the Kakkis EveryLife Foundation, 95% of rare disease have not one single approved drug treatment.
  • 350 million people globally are fighting rare diseases.
  • Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.
James