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Fortune
Fortune
Erin Prater

It takes an average of 8 years for a rare disease patient to get diagnosed. Why is it so hard to get life-altering genetic testing in the U.S.?

(Credit: Getty Images)

Key takeaways

  • An estimated 10% of the global population suffers from rare disease; 80% of rare disorders are thought to be genetic.
  • Whole genome sequencing (WGS) can provide diagnoses in about 40% of cases, for several hundred dollars per patient.
  • In the U.S., access to the technology depends factors like the state where patients live, their insurance, and their financial resources.

No one wants to find themselves sick or in need of a medical diagnosis. But there are those out there who already are—and are desperately seeking answers.

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