Numbers

RARE Disease Facts

You are not alone. These RARE facts show the impact of rare disease. Share these statistics with your communities to let them know that RARE really is everywhere.

RARE Diseases Impact More People Than
Cancer and AIDS Combined

1 in 10

People are Affected by Rare Disease

400

Million People Suffer From a Rare Disease Globally

8 in 10

Rare Diseases are Genetic

95%

of Rare Diseases Lack an FDA Approved Treatment

7 in 10

Rare Diseases Start in Childhood

10,000+

Distinct types of Rare and Genetic Diseases

6+ Years

The Average Time it Takes for Rare Patients to Receive an Accurate Diagnosis https://everylifefoundation.org/delayed-diagnosis-study/

Up to $517,000

The economic impact of a delayed diagnosis is up to $517,000 in avoidable costs per patient.

“Delivering Hope for Rare Diseases” [Fact Sheet]. National Center for Advancing Translational Sciences (NCATS), January 2023. https://ncats.nih.gov/sites/default/files/NCATS_RareDiseasesFactSheet.pdf.

“Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database” Nguengang Wakap, S., Lambert, D. M., Olry, A., et al., 2020. https://www.nature.com/articles/s41431-019-0508-0.

“How many rare diseases are there?” Haendel, M. A., Vasilevsky, N., Unni, D., et al. , 2020 . https://pmc.ncbi.nlm.nih.gov/articles/PMC7771654/.

“The Cost of Delayed Diagnosis in Rare Disease: A Health Economic Study” EveryLife Foundation for Rare Diseases, 2021 . https://everylifefoundation.org/delayed-diagnosis-study/.

“The national economic burden of rare disease in the United States in 2019” Yang, G., Cintina, I., Pariser, A., et al., 2022. https://doi.org/10.1186/s13023-022-02299-5.

“The Power of Being Counted” Global Genes / RARE-X , 2022. https://globalgenes.org/report/the-power-of-being-counted/.