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Most Americans have experienced some level of anxiety about the COVID-19 pandemic.  Recent survey results show that anxiety is magnified for people living with a rare disease.  

The National Organization for Rare Disorders, NORD, polled nearly 800 people who have a rare disease or care for someone who does.  Rare diseases can include genetic conditions; disorders that keep the immune system weak; and neurological, blood, metabolic, movement, eye or skin disorders.  According to the survey, COVID-19 has impacted 95% of respondents’ “immediate and long-term health and well-being.”  

Key Findings

Health care providers have advised people with underlying health conditions, including those with rare diseases, to be extra vigilant about protecting themselves from contracting the virus.  The same advice applies to their caretakers.  Extra handwashing, disinfecting commonly touched surfaces and wearing a mask are all recommended safety measures.

Learning about what support may be available can also help ease concerns.  In some cases, patient assistance programs can help cover the cost of medications for those who can no longer afford them.   

To learn more about the survey results, read NORD’s COVID-19 Community Survey Report

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