RAREwithCOVID in the NEWS

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 "The RAREwithCOVID registry launched last week, and already it is open to any rare disease patient from anywhere in the world. By filling out a short online survey, participants contribute to understanding the progression of COVID-19 among their own rare disease community compared with the general populace. Also, as a side benefit, participants can connect with researchers running COVID-19 studies."

 "Jason Colquitt, CEO of the Across Healthcare ... hit upon a simple idea while talking to various rare disease patient groups to build a data set of people with rare diseases who had tested positive for COVID-19. He’s created a registry for rare disease patients to provide some basic information if they have contracted the virus so researchers that may choose to pursue studies can find them."

"...rare disease patients are at higher risk of serious illness by the new coronavirus and will also have uniqueness as therapeutics are developed.  The RAREwithCOVID registry is IRB approved and allows any patient with a rare disease to report if they have tested positive to COVID-19.  The project is working with many patient advocacy groups to exchange data and welcomes request to collaborate with others interested in this rare disease population. "