NORD Publishes Rareinsights Report

  • Friday, November 20, 2020

The National Organization for Rare Disorders (NORD) published a new RareInsights report today looking at comparative trends in rare disease care and treatment in the U.S. over a 30-year period.

Key findings include:

  • 88% of people today reported that they would consider using an investigational drug or treatment, compared to 62% in 1989
  • 16% of individuals today reported that they had already participated in a clinical trial for their rare disease, compared to 12% in 1989
  • 17% of individuals today have already relocated or are considering relocating to access care for their rare disease, versus 8% in 1989
  • 2% of respondents today reported that they did not have health care insurance, versus 9% in 1989

The full report is accessible at: