NORD Unveils Free Data Literacy Course for the Rare Disease Community

"From Records to Research" empowers patients, caregivers to take control of their health

DANBURY, Conn., Aug. 25, 2025 /PRNewswire/ -- The National Organization for Rare Disorders (NORD^®), the leading national nonprofit serving more than 30 million Americans with rare diseases, today launched a free online data literacy course designed to boost data literacy among patients and caregivers. Tailored for those affected by rare diseases, the course empowers patients and caregivers to make informed decisions, advocate effectively, better communicate with health care providers, and engage more meaningfully in research.

This self-paced, mobile-friendly course, entitled "From Records to Research: Making Sense of Health Data for Rare Diseases," was created in partnership with Critical Path Institute (C-Path) and the Food and Drug Administration (FDA). It is now available on NORD^® RareEDU^®, NORD's online learning platform.

Building data literacy will help rare disease patient advocates champion urgently needed funding, shape policy, and ensure research addresses the real needs of their communities – all critical to driving scientific innovation.

"Patients and caregivers in the rare disease community are constantly navigating overwhelming amounts of medical information while managing complex, often misunderstood conditions," said Rebecca Aune, NORD Director of Education Programs. "With NORD's new data literacy course, patients and their families will be able to make smart decisions regarding participation in research, clinical trials, and the management of their health data, leading to better care and advocacy."

"From Records to Research" is divided into four modules that give patients and caregivers the tools to better understand and engage with health data:

• Understanding Clinical Data: An in-depth look at how medical information is collected, the role of electronic health records, key medical terms, and data privacy protections.
• Medical Devices and Health Data: Explores how data is shared, the types of medical devices that collect it, and how this information supports diagnosis and treatment.
• Research and Health Data: Provides insight into how study design, how scientists collect and analyze data, and what patients should consider before joining a study, including the importance of informed consent.
• How Data Becomes Knowledge to Improve Health: Discusses how medical research plays a key role in shaping the care patients receive, the treatments they trust, and the decisions they make about their health.

Participants in the course, which will also be translated into Spanish, will receive a certificate upon completion.

As an innovator in education and a leader in advancing research and outcomes, NORD deeply values partnerships that make programs like this possible. Through our collaboration with C-Path and the FDA, and with funding provided by the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®), an integrated database and analytics hub designed to accelerate drug development, we are advancing the creation of novel solutions that can bring treatments to rare disease patients faster.

Learn more about the "From Records to Research" course: https://learn.rarediseases.org/courses/from-records-to-research-making-sense-of-health-data-for-rare-diseases/ 

About the National Organization for Rare Disorders (NORD^®)
Founded in 1983, the National Organization for Rare Disorders (NORD^®) is the leading independent, nonpartisan, nonprofit organization dedicated to improving the health and lives of over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy. Learn more at rarediseases.org.

SOURCE National Organization for Rare Disorders (NORD®)