For many people suffering from rare diseases, the diagnostic odyssey is far too long. Nearly 1 in 13 people are living with an undiagnosed condition, and it typically takes five years or longer to receive the correct diagnosis.

Consistent clinician and patient education about rare diseases is crucial for helping to reduce time to diagnosis of rare diseases. To that end, the National Organization for Rare Disorders (NORD) forged an exclusive partnership with PlatformQ Health to develop CME curricula focused on helping healthcare providers to better recognize, diagnose, and treat rare conditions, and to help patients in the management of their diseases. A 501(c)(3) organization, NORD is dedicated to the identification, treatments, and cure of rare disorders through education, advocacy, research, and patient services. 

Since 2019, NORD and PlatformQ have launched 47 educational sessions, featuring interactive panel discussions with specialists, patient vignettes, polling, and live Q&As. Tethered education in the form of joint patient/provider programming gives providers insight into patient experiences through direct patient stories and advocates from NORD member organizations.

On October 18, PlatformQ Health will be presenting outcomes from the educational sessions at the NORD Summit 2021. This virtual event brings together disease experts from patient advocacy groups, government, industry, and academia to tackle critical topics related to rare diseases and orphan products. 

NORD poster

The program results were tracked through pre-testing and live polling as well as polling immediately after sessions and two months later. Aggregate data across the sessions demonstrated that of the 4,588 participants in the sessions, 944 were healthcare providers and 3,644 were patients or caregivers.

There was a high level of engagement in the sessions, with 389 healthcare provider questions asked and 288 patient/caregiver questions asked. There were more than 20,000 hours of rare disease education viewed by learners, with 6,196 CME credits awarded.