Founded by rare disease patient advocates 40 years ago, NORD remains passionate and driven to foster innovative paths to better health. Deeply trusted, NORD brings experts and clinical insights together to accelerate the pace of research for rare conditions. Patients are empowered as partners throughout the process – from study initiation, to co-design, to implementation, to data ownership. By harnessing the power of data and patient-reported experiences, IAMRARE studies are informing clinical trials, new treatment methods, and transformative change for the rare disease community.
Statistics featured below are as of Jan 1, 2022