cloud transformation

A pervasive issue for EB patients and their families is data management. Patient information and medical research are siloed, meaning researchers and individuals have a hard time accessing current information on the disorder. EBRP’s leadership determined that one of their objectives was to use cloud tools to combine this data together on one platform, making it easier for patients and their families to access educational resources and connect with other patients, doctors, and clinical trials. This led EBRP to build a cloud-based platform that guides patients to the nearest doctors, research studies, treatment clinics, trials of new drugs, and patient support groups—similar to the way that GPS navigates you to your destination.

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