A national organization for rare disorders Program
NORD organization is a support organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
In the late 1970s and early ‘80s, patients and families living with rare diseases felt alone and forgotten. Very little was being done to study these diseases or develop treatments. Leaders of several rare disease patient organizations formed an ad hoc coalition to focus attention on this problem. That coalition became NORD and was an instrument in the Orphan Drug Act of 1983, which created financial incentives for the development of treatments for rare diseases.
Since then, NORD has served as the hub of the rare disease community, leading efforts to connect patients and patient organizations with other stakeholders and driving progress for all. View the timeline below of highlights through the years.
History of Leadership
For many years, people with rare diseases walked alone. Patients and their families coped with daunting medical and financial issues with few resources and no one to guide the way. Then, a small group of patient advocates formed a coalition to unify this community and mobilize support to pass the Orphan Drug Act. In 1983, the coalition became NORD, the National Organization for Rare Disorders. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies, advancing medical research, and providing patient and family services for those who need them most.
Patient and Professional Education
NORD provides information about rare diseases, patient organizations and other resources for patients and families. We also promote awareness of rare diseases among physicians and other medical professionals.
Recognizing that rare diseases are a global public health challenge, NORD has strategic partnerships with international umbrella organizations, such as the European Organization for Rare Diseases (EURORDIS) and the Japanese Patient Association (JPA). NORD represents the U.S. on both Rare Diseases International (RDI) and Rare Disease Day steering committees.
If you live with a rare disease or love someone who does, NORD organization will help you. For more than 30 years, they have been providing services for patients and their families, rare disease patient organizations, medical professionals, and those seeking to develop new diagnostics and treatments. We are here to support every member of the rare disease community with programs and services focused on one ultimate goal: to improve the lives of individuals and families affected by rare diseases.
There are more than 30 million Americans affected by one or more of the nearly 7,000 rare diseases. Support NORD with a tax-deductible donation today. Give to empower the rare disease community. If you have any questions about your donation(s), please contact them at (617) 249-7300 or at [email protected] website: https://rarediseases.org/
Don’t want to donate online? You can mail your donation to NORD, Dept. 5430, P.O. Box 4110, Woburn, MA 01888. Or visit NORD DONATE PAGE NOW
The National Organization for Rare Disorders is a 501(c)(3) organization. Gifts are deductible to the full extent allowable under IRS regulations. Your donation helps NORD serve the 30 million Americans who, because their diseases are rare, might otherwise be forgotten. NORD relies on the contributions of grateful patients, families, and others who care about the medically disenfranchised. With your help, NORD will continue to provide accurate, reliable information and will be a strong voice in advocating for needed research and improved treatments.