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National Organization for Rare Disorders
Alone we are rare. Together we are strong.®
About National Organization for Rare Disorders
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is an independent patient advocacy organization dedicated to helping individuals with rare diseases and the organizations that serve them. NORD, along with its 350+ patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient support services. NORD serves all stakeholders in the rare disease community, including patients and their families, patient organizations, researchers, medical professionals, medical students, and companies developing orphan products. NORD also works closely with many government agencies, most notably the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). All NORD programs are focused on one ultimate goal: to improve the lives of individuals and families affected by rare diseases. NORD is the official U.S. sponsor of Rare Disease Day, an international observance day held on the last day of February each year. Its goals are to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. To learn more, visit rarediseases.org/rare-disease-day. To learn more, please visit the NORD website at www.rarediseases.org. You can also follow NORD on X at @RareDiseases.
Verified activity
Signals from National Organization for Rare Disorders
8 published signals
Presence & Recognition
National Organization for Rare Disorders is hosting the LivingRareLivingStronger event in Florida on Friday, December 4, at the Broward Center for the Performing Arts in Fort Lauderdale.
Reported by National Organization for Rare Disorders
Presence & Recognition
National Organization for Rare Disorders announced that the 2026 Running for Rare team for the TCS New York City Marathon will run 26.2 miles to raise funds and awareness for the rare disease community.
Reported by National Organization for Rare Disorders
Presence & Recognition
National Organization for Rare Disorders is hosting its first LivingRare virtual event entirely in Spanish on Saturday, October 3, from noon to 2:30 p.m. ET, featuring expert-led information on rare disease genetics and navigating next steps after a diagnosis.
Reported by National Organization for Rare Disorders