THE DIAGNOSTIC ODYSSEY
Why Target Rare
Rare disease patients typically wait 5-8 years to get an accurate diagnosis. This search for answers is known as diagnostic odyssey. During a diagnostic odyssey, rare disease patients will see up to 10 different providers, half of which are specialists, be misdiagnosed three times and inappropriately care for at least twice, while frequently being tagged as psychosomatic or drug seekers. Patients also face irreparable harm to their bodies as well as running the risk of their therapeutic window closing.
HOW IT WORKS
Our team's combined 40+ years in the rare disease marketplace and personal experience with the rare disease diagnostic odyssey led us to believe that there had to be a better way. We knew the data to accelerate rare disease diagnoses and target patients existed in the electronic health records. We just had to figure out how to access it while protecting patient privacy and maintaining legal compliance. Rare Disease Data Trust is the solution.