Research Survey: Impact of COVID-19 on Rare Disease Community

The biomedical research enterprise is in overdrive right now. Experts in laboratories coast-to-coast are vigilantly examining the inner workings and characteristics of the novel coronavirus disease COVID-19. This includes a new online survey supported by the National Institutes of Health (NIH) that explores how the COVID-19 pandemic is impacting individuals with rare diseases, their families, and their caregivers. The survey results will provide a clearer picture of the needs of people with rare diseases during the COVID-19 pandemic and future public health emergencies.

According to the NIH, “impetus for the survey began through conversations among network researchers and patient advocacy organizations. Patients, families, and caregivers were worried about how COVID-19 might affect them. Questions in the research survey focus on a range of topics, from a patient’s ability to get proper care for a rare disease or condition to mental and emotional health. The survey asks what their concerns are as a person with a rare disease, or as family members and caregivers.”

The survey is a great example of collaboration between researchers, medical experts, patients, and their caregivers. The data the survey yields will inform patient treatment plans and make a difference for the rare disease community and beyond. For more information on the survey, including how to participate, go to https://www.rarediseasesnetwork.org/COVIDsurvey.