Rare Diseases are Not Rare

April 27, 2022 at 11:00 AM UTC

Rare Diseases Are Not Rare

A rare disease is defined as any disease that affects fewer than 200,000 people in the United States. There are over 7,000 known rare diseases with new diseases being discovered every year. An estimated 30 million people in the U.S. are likely to have one or more rare diseases and individuals living with a rare disease often face collective challenges. It can take up to 15 years for a patient to be diagnosed and requires seeing multiple medical specialists.

Hear from Dr. Eric W.K. Sid and Meera A. Shah from the NIH Office of Rare Diseases Research (ORDR) at the National Center for Translational Sciences (NCATS) to discuss the challenges rare disease patients and caregivers go through in finding a diagnosis and discover resources useful to the rare disease community.

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This page was last updated on: 04/26/23 19:17