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Online Survey Debuts to Discover Effect of COVID-19 on Rare Disease Patients

Updated: Jun 10, 2020



The monumental effort to respond to an unprecedented health threat

As the country continues the monumental effort to respond to an unprecedented health threat, it is becoming increasingly obvious that the impact of COVID-19 goes beyond the effects experienced by many of the virus’ patients. In fact, this disease may be detrimental even to rare disease patients who never contract it.


When the threat of this virus first hit the news, many rare disease patients worried primarily about contracting the illness. They wondered if they would be more susceptible to falling victim to it, and whether they might develop a more serious case as a result of their underlying conditions.

In response to these concerns, the Rare Disease Clinical Research Network (RDCRN) has developed an online survey to better understand the effect of COVID-19 on people wit rare diseases, their families and caregivers. The RDCRN, comprised of clinical research organizations and patient advocacy groups, studies rare diseases of the brain, heart. Lung, kidney, immune system and more. A disease is considered rare if it effects less than 1 in every 200,000 people in the US. While each rare disease effects between a few hundred and a few thousand patients, collectively, the rare disease patient population includes more than 30 million people in the US.

The RDCRN survey covers a range of topics, from access to care and medication to experiences navigating the Emergency Department should a visit become necessary. Their objective is to discover the particular challenges the rare disease community faces and how the RDCRN can help them meet their needs by providing information and advice from its network of clinicians and patient advocates. They also hope that the survey responses can help the researchers understand why certain subgroups of patients fare better and some worse and whether certain individuals are more prone to COVD-19 infection as a result of underlying conditions. The RDCRN hopes to receive 5,000 responses. To learn more and have your voice heard, visit www.rarediseasenetwork.org/COVIDsurvey.

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