NORD

NORD, or the National Organization for Rare Disorders, is dedicated to enhancing the lives of individuals affected by rare diseases through comprehensive support, education, and advocacy. With a mission to elevate care, advance research, and drive policy change, NORD plays a pivotal role in the rare disease community. The organization offers a wealth of resources, including a Rare Disease Database featuring detailed information on over 1,200 rare diseases, patient assistance programs to provide access to medications and diagnostics, and educational opportunities through their RareEdu® online platform.

NORD collaborates with Rare Disease Centers of Excellence to ensure that patients receive the highest standard of care and engages patients and families through initiatives like the IAMRARE® program to gather data for research purposes. Additionally, NORD advocates for policy changes to improve awareness and support for rare diseases. By fostering a sense of community, NORD empowers individuals by providing essential tools and information to navigate their unique challenges. Together, they strive to create a future where patients with rare diseases can lead their fullest lives.