MIT Technology Review reported that a quarter of rare diseases take between 5 and 30 years to diagnose.
Notes on verification
Directly verified against the original 2013 MIT Technology Review article, which cites EURORDIS for the 25%/5-30 year diagnosis delay statistic. Corroborated by multiple independent peer-reviewed sources (The Lancet, PLOS One, PMC) referencing the same EURORDIS survey data.
Sources
- This New Search Engine Helps Doctors Diagnose Rare, Obscure Diseases (smithsonianmag.com)
- https://www.technologyreview.com/2013/03/18/179360/the-rare-disease-search-engine-that-outperforms-google/ (technologyreview.com)
- https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(09)60519-5/fulltext (thelancet.com)
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9670379/ (ncbi.nlm.nih.gov)
- https://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0222637 (journals.plos.org)