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95% of Rare Disease Patients Affected by COVID-19

Updated on June 18, 2020

COVID-19 is causing significant challenges for millions of Americans living with rare diseases. People with underlying conditions are at risk of more severe illness from COVID-19, and rare disease patients, their caregivers and family members are seeing their lives disrupted in numerous other ways.  The National Organization for Rare Disorders (NORD) conducted a survey of the rare disease community in early April to help understand and bring these issues to light.* We wanted to share these sobering facts with you and let you know how The Genesis Foundation is responding to our families’ needs. 

Prior to this pandemic, 76% of families impacted by rare disease reported to NORD that they suffered financial burden as a direct result of their rare disease. The latest NORD survey outlines that, as unemployment rises due to the impact of COVID-19, 29% of the survey respondents have lost jobs, 11% of whom also lost access to health insurance with the change in job status. The majority of these respondents (74%) identified as the patient’s caregiver or family member. In addition, 40% of households are experiencing a loss of income.  Financial instability has the potential for devastating consequences.*

Findings also show that 39% of survey participants have faced challenges accessing medical care or treatment, and 74% have had a medical appointment canceled. Only 59% have been offered a telephone or video call as an alternative to an in-office appointment.  Cancelled medical appointments are more concerning for this population given that many people with rare diseases spend months and even years trying to pinpoint a diagnosis or find therapeutic relief, via long-awaited visits with specialists, advance scheduling for testing procedures, travel to meet with medical experts and participation in research and clinical trials.*

The Genesis Foundation for Children continues to provide access to medical care and alleviates financial concerns by funding the Feingold Center for Children.  This funding provides easy access to telemedicine, with low- or no-cost impact.  100% of the families who have appointments at The Feingold Center have been offered a virtual visit which allows our Clinical Director, Dr. Nowak, to meet with families about their concerns – health, financial or educational – so that our care team can connect them to needed resources and advocate on their behalf.

To access the full report, please click here.

*National Organization for Rare Disorders, “COVID-19 COMMUNITY SURVEY REPORT, 95% of Rare Disease Patients Affected, May 5, 2020”