Promise and Power: Accelerating Research with Patient-Powered Registries

How do you advance research for a treatment, therapy, or cure when, little is known about a disease that affects so few people? For decades, people living with rare disease had to wait for the medical or research community to take initiative to start patient registries to collect data about their disease.

These registries are foundational for understanding who is affected by the disease and how the disease progresses or responds to different interventions, otherwise known as biomarkers. By systematically collecting this data, clinicians and researchers are better able to identify new treatments and therapies that can alleviate specific symptoms or slow down progression of your disease, and ultimately develop cures.

NORD changed this paradigm by putting the power of research and patient registries into the hands of the patient community. We launched the IAMRARE^® research program with the intention of uniting patients and research communities on an inclusive and informed path to improving care. We focus on providing you with the education and information needed to feel confident and comfortable sharing your data for research while assisting patient organizations with the tools, resources, education, and support needed to start a patient registry for their patient community. Organizations in our program have successfully incentivized researchers and companies to work on their disease; taking them from having no research to multiple clinical trials in just a few years.