What is a Rare Disease?


What is a rare Disease?

According to Global Genes, a disease is defined as rare when it affects less than 200,000 people. 

  • Rare Diseases affect 30 million Americans, or 1 in 10 people, and 350 million people worldwide
  • If all of the people with Rare Diseases lived in one country, it would be the world’s 3rd most populous country
  • Rare Diseases affect more people than AIDS and Cancer COMBINED
  • 95% of Rare Diseases do not have a single FDA approved drug treatment and there are no cures
  • Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease 

Common Problems:

According to Eudrodis

  • Lack of scientific knowledge and reliable information around rare diseases
  • Common symptoms hide underlying rare diseases, leading to misdiagnosis and delaying treatment
  • Massive social and financial burdens
  • No existing effective cures adds to high level of pain and suffering endured by patients and their families
  • Rare Diseases often significantly affects a patient's quality of life