NORD is committed to developing patient registries for all 7,000 rare diseases. A patient registry is more than just a versatile online system that securely collects and stores data for medical research; it is a dynamic participant-driven resource that can empower and unite the rare disease community through shared knowledge.
Many rare disease communities exist without the support of a formal patient advocacy organization, yet these groups of patients and caregivers still need champions! That is where NORD comes in. We aim to offer equal opportunity to all rare disease communities to contribute their data and inform and shape research, quality clinical care models, and the development of new products. NORD is pleased to announce that we are building a patient registry to support the Undiagnosed patient community. Longitudinal, natural history study data collected in the Undiagnosed Rare Disease Registry will support research and drive the discovery of better treatment options for those affected by rare diseases. Once NORD has launched the Undiagnosed Rare Disease Registry, an official announcement with instructions on how to join will be released.
About the IAMRARE™ Registry Program
NORD’s IAMRARE™ platform is an easy to use system that allows patients and organizations to inform and shape medical research and translational science for rare diseases by launching high-quality, customized registries to collect the data needed to define the natural progression of their disease.
For more information, email, firstname.lastname@example.org
Alone, your data is rare. Together we have strength in numbers.