Poor Health-Related Quality of Life, Many Burdens in Rare Diseases, Study Finds - AJMC.com Managed Markets Network

People with rare diseases experience significant diagnostic delays, high out-of-pocket costs, travel burden for specialty care, and insufficient dental and psychological support, according to new findings.

People in the United States with rare diseases have poor health-related quality of life (HRQOL) and high stigma related to patient satisfaction and health care access, consistent with previous resear… [+4444 chars]

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