35 MILLION IN THE UNITED STATES ALONE
One in 10 People
Have a Rare Disease
These patients typically wait 5-8 years to get an accurate diagnosis. During that diagnostic odyssey, these patients will see up to 10 different providers (half of whom are specialists), be misdiagnosed three times and inappropriately cared for at least twice, while frequently being tagged as psychosomatic or drug seekers.
50% of rare disease patients and caregivers attributed diagnostic delays to a lack of disease awareness, yet with more than 7,000 rare diseases, it is impossible for any one healthcare provider to understand all possible diagnoses.
Learn more about rare diseases from expert resources
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.