June 27, 2022

COVID-19 and the Rare Community

Featured imageText reads: COVID-19 and You; We asked you to tell us about COVID-19's impact on your healthcare experiences. 731 of you responded. Here's what we learned.
Read the results of our COVID-19 healthcare impact survey.

When we asked participants in our research programs about the pandemic’s impact on healthcare experiences, 731 responded, representing 50 rare conditions. These survey results present both stark reminders of how difficult the pandemic has been and glimmers of hope around improved access to care for the rare community.

“We wanted to know more about whether telehealth could be a viable alternative to in-person care for rare communities,” explains Ashley Leek, PhD, and Scientific Affairs Manager at AllStripes, who designed the survey. “Accessing expert care is especially difficult when patients are dispersed throughout the country and experts only exist in a few locations. If telehealth was widely available, would access to experts increase without the additional travel burden?”

The pandemic has been rough, to say the least 

Nearly 25% said fears of the virus prevented you from seeking medical care.

Nearly 25% said fears of the virus prevented you from seeking medical care.

When asked about having to cancel or reschedule in-patient care from a provider, 60% said yes.

37% had trouble accessing therapies, medications and/or treatments during shutdowns. 

Telehealth might solve some — but not all — problems with access 

When asked whether telehealth appointments met expectations, 67% answered "often" or "always," 24% answered "sometimes," 9.2% answered "never" or "rarely."

About 67% answered “often” or “always” when asked whether telehealth appointments met expectations. About 9.2% answered “never” or “rarely.”

About 80% attended a telehealth care appointment during the pandemic.

When asked about the desire for ongoing telehealth appointments about 56% answered “yes, but only for some types of appointments.”

Thank you

We know the rare disease community is made up of some of the busiest people in the world, and we're grateful to all who took the time to share.

Interested in reading more about the original research we’re conducting with AllStripes data? Check out our Research insights page.

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