Patients often face an epic journey of many years before receiving a diagnosis for a rare disease. With nearly one in 10 Americans impacted by a rare condition, it is essential that we decrease the time to diagnosis to improve the lives of these individuals and their families. 

To that end, the National Organization for Rare Disorders (NORD) joined PlatformQ Health in developing CME programs focused on a series of rare disease topics. These sessions serve to help healthcare providers (HCPs) better recognize, diagnose, and treat rare disorders. Since 2019, the two organizations have worked closely together to produce 67 educational sessions for providers, patients, and caregivers. Led by healthcare professionals, NORD member organizations, NORD stakeholders, as well as patients and caregivers, the programs were offered live and on demand. 

Outcomes from this major initiative were presented at the 2022 NORD Summit. As of July 2022, more than 25,808 learners took part in the education, consuming more than 230,000 hours of content in total. This brought a considerable impact for patients, providers, and caregivers.

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93 percent of HCP learners reporting that the program had a positive impact on their clinical practice and 92 percent of HCP learners sharing that the sessions had a positive impact on patient experience and outcomes. Providers noted that the sessions broadened their understanding of various conditions, including the subtleties of the different degrees of presentation.

For the patient sessions, 66 percent of learners reported a positive impact on communication with their provider, while 58 percent reported that the education helped them feel more in control of their healthcare decisions. 

The results demonstrate the effectiveness of online education for rare diseases when it comes to influencing provider practices and patient outcomes. The multi-stakeholder collaboration had a significant impact on development of relevant educational materials for audiences who need it the most.