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
- NORD https://rarediseases.org/
- Global Genes https://globalgenes.org/
- EveryLife Foundation for Rare Disease https://everylifefoundation.org/
- Genetic and Rare Diseases Information Center https://rarediseases.info.nih.gov/
- Rare Disease Day https://www.rarediseaseday.org/
- Rare Disease on The Mighty https://themighty.com/topic/rare-disease/
- The Disorder Channel https://www.thedisordercollection.com/
- RareConnect https://www.rareconnect.org/en
- Rare Revolution Magazine https://www.rarerevolutionmagazine.com/