Feelings of patients with rare diseases in the U.S. compared to other patients as of 2015

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Patients with rare diseaseRest of population
Feel the doctor is very attentive to their needs69%62%
Think having regular contact with their doctor is the best way to avoid illness63%48%
Feel they should consult a medical professional whenever they don't feel well45%34%
Have a lot of energy all or most of the time23%38%
Feel worn out all or most of the time47%21%
Feel tired all or most of the time53%27%
Have been happy all or most of the time51%61%

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This statistic presents the feelings of rare disease patients in the U.S. as of 2015, compared with other patients. It was found that 47 percent of rare disease patients feel they are worn out all or most of the time, compared to just 21 percent of respondents from the rest of the U.S. population.
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Release date
February 2016
United States
Survey time period
Supplementary notes
Patients with the following rare diseases responded to NHWS: lupus nephritis, cystic fibrosis, hemophilia A, hemophilia B, connective tissue disease, ITP, Paget’s disease, and Sjogren’s syndrome.

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