Rare disease patients struggle to find PPE

People with rare diseases who often had to wear personal protective gear before the COVID-19 pandemic are now struggling to get it due to the pandemic, according to a survey by the National Organization for Rare Disorders.

Half of the respondents of the survey, which was conducted in June and included 833 people, said they needed PPE before pandemic to cut infection risks caused by their rare disease. Almost 1 in 5 said they required PPE constantly. 

About 14 percent of the  respondents said they've had trouble accessing medical supplies during the pandemic. Of those, 68 percent reported struggling to find PPE. Problems with obtaining supplies were reported in 44 states. 

An association between challenges obtaining PPE and greater levels of worry also was discovered, the organization reported. 

"I'm just generally concerned with the public's apparent lack of consideration of at-risk populations when choosing not to follow public health precautions to limit the spread of SARSCoV-2. I wish more people were aware of the risk they transfer to the rare-disease population," one survey respondent said. 

Find the full survey results here

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