Individuals with Rare Diseases Impacted, Concerned by COVID-19

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The findings of a COVID-19 Community Survey Report conducted by the National Organization for Rare Disorders (NORD) reveals the far-reaching impact the pandemic is having on patients and families with rare disorders.

NORD – based in Danbury and Washington, D.C. - is the leading independent advocacy organization representing over 25 million Americans affected by a rare disease. NORD is committed to the identification, treatment and cure of the more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy.

The findings reflect a community directly affected and overwhelmingly concerned about the COVID-19 crisis.  The survey found that:

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  • 95% of respondents have been impacted at a cost to their immediate and long-term health and well-being

  • 98% are worried about COVID-19; of those, 67% are very or extremely worried

  • 74% have had a medical appointment canceled; of those, 65% were offered an alternative appointment via telephone or video

  • 69% of respondents are concerned about medication and medical supply shortages

In the United States, over 25 million patients and families who are impacted by rare diseases are now managing consequential challenges brought on by the novel coronavirus.

People with underlying health conditions face not only more severe illness, but rare patients, caregivers and family members are experiencing other considerable life disruptions—including financial instability, canceled medical appointments, concerns regarding drug shortages and other important issues.

There were 772 participants responding to the survey, conducted by NORD’s research team from April 1 through April 8, 2020. Respondents represent 49 of 50 states and Washington, DC, and multiple disease categories, including genetic conditions, primary immunodeficiencies, neurological, blood, metabolic, movement, eye, skin and other types of rare disorders.

The COVID-19 Community Survey Report is published through RareInsights™, a NORD initiative to expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families.

“Through the information generously shared with us by survey participants, we are able to better understand the specific concerns and impact of COVID-19 on the rare community,” said Vanessa Boulanger, NORD’s Director of Research. “This knowledge helps us to provide the support and services most needed by our community during this challenging time.”  

NORD is listening and will continue to channel the community’s collective voice into action, using information such as this survey data to help apprise policymakers on the challenges members of the rare community are facing and to shape our own programs and services, according to officials of the organization.

As part of its response to the evolving COVID-19 situation, NORD’s policy team has been working to protect access to necessary medical treatment including telemedicine, home infusions and medication refills.

NORD is also continuing to advocate to the Department of Health and Human Services and state health departments to ensure rare disease patients are not discriminated against during COVID-19 triaging. 

A follow-up survey is being planned to further monitor the experiences of patients and families as the pandemic continues. NORD has developed the growing COVID-19 Resource Center, providing materials created by NORD as well as information from vetted sources to help educate and empower people living with rare diseases during this time. Also available is the NORD COVID-19 Critical Relief Program, which provides assistance with non-medical essential needs to eligible rare disease patients. Donations to the program are currently being accepted.