Skip to main content
Home » Rare Diseases » How COVID-19 Has Changed the Way Rare Disease Patients Receive Care
Rare Diseases

How COVID-19 Has Changed the Way Rare Disease Patients Receive Care

With concerns over COVID-19 exposure, many rare disease patients have faced challenges in receiving necessary care over the past few months. Pamela K. Gavin, chief strategy officer of the National Organization for Rare Disorders (NORD) explains how healthcare has adapted to deliver this necessary care during a pandemic.

Pamela K. Gavin

Chief Strategy Officer, National Organization for Rare Disorders (NORD)

What are some challenges in treating rare diseases as a result of the pandemic?

COVID-19 has affected people living with rare diseases in several ways. The National Organization for Rare Disorders (NORD®) has found through two recent surveys and from conversations with the community that rare disease patients have been impacted by canceled medical appointments, diminished access to both personal protective equipment and medications, and financial instability, including job loss. 

In addition, the community has struggled with anxiety stemming from these issues, as well as being at greater risk for the virus and threat of potential drug shortages. Months of social distancing and lockdown measures have compounded the feelings of isolation ordinarily experienced by many in the rare disease community. 

On the research front, many clinical trials have been canceled or postponed indefinitely, creating new, unexpected challenges in the progress toward new treatment options for the more than 7,000 rare diseases, over 90 percent of which do not have an FDA-approved treatment.

How have telehealth services changed as a result of the pandemic?

Before March 2020, few people had ever seen a healthcare provider outside of a medical facility. Typically, rare disease patients receive care in hospitals, health centers, and doctors’ offices. 

Due to the specialized nature of the treatment many rare disease patients require, this often necessitates traveling significant distances, even across state lines, to obtain care. In the face of the COVID-19 pandemic, these patients are at higher risk. 

Fortunately, both federal and state governments temporarily but rapidly expanded the types of patients and providers eligible to utilize and be reimbursed for telehealth services. Though many challenges remain, the expansion of telehealth services has the potential to create long-lasting improvements for rare disease patients. 

This change in telehealth has been well received by the rare disease community. For the last several months, NORD has been hosting virtual discussion groups in all 50 states, which have provided valuable feedback on the patient and provider experience with telehealth. 

In our recent survey of the rare disease community, we found that out of over 800 respondents, more than 83 percent had been offered a telehealth visit during the COVID-19 pandemic by their health provider, and of those who were offered a visit, almost 88 percent accepted. Out of all patients who reported having had a telehealth visit, 92 percent described it as a positive experience. 

This is encouraging news for a patient population that depends on being able to access specialized healthcare services in order to thrive.

What are some online resources that families can use to find important information on the treatment of rare diseases?

The NORD website,, features an extensive Rare Disease Database that can be searched for information on specific diseases, support organizations, and more. Thesite’s Patient and Caregiver Resource Center provides patients and caregivers with free webinars, fact sheets, infographics, and other useful materials. 

Another excellent source is the National Institutes of Health’s Genetic and Rare Diseases Information Center (GARD), a program of the National Center for Advancing Translational Sciences that provides the public with access to current, reliable information about rare and genetic diseases at

Next article