Causes: Health, Specifically Named Diseases, Voluntary Health Associations & Medical Disciplines
Mission: NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Target demographics: rare disease patients and their families
Geographic areas served: The United States
Programs: Patient services provide patient assistance programs including free drug, premium, and co-pay assistance, travel and lodging assistance for clinical trials, and expanded emergency and ancillary access programs.
membership and education provide training and mentoring to assist rare disease patient organizations in achieving the highest possible level of service to their members while adopting best practices and adhering to accepted non-profit standards. Also, patient and family education, health professional education, and public awareness programs are offered through extensive online, electronic, in-person, and in-print educational resources and programs.
research and medical and scientific affairs administer a program of grants and fellowships to support research on rare diseases funded by contributions from the public, patients and their families, and patient organizations.
advocacy serves as the liaison between the rare disease community and national institutions that have a direct impact on the health of the 25-30 million Americans living with rare diseases, including the U. S. Congress, FDA, and National Institue of Health.
Mission: NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Target demographics: rare disease patients and their families
Geographic areas served: The United States
Programs: Patient services provide patient assistance programs including free drug, premium, and co-pay assistance, travel and lodging assistance for clinical trials, and expanded emergency and ancillary access programs.
membership and education provide training and mentoring to assist rare disease patient organizations in achieving the highest possible level of service to their members while adopting best practices and adhering to accepted non-profit standards. Also, patient and family education, health professional education, and public awareness programs are offered through extensive online, electronic, in-person, and in-print educational resources and programs.
research and medical and scientific affairs administer a program of grants and fellowships to support research on rare diseases funded by contributions from the public, patients and their families, and patient organizations.
advocacy serves as the liaison between the rare disease community and national institutions that have a direct impact on the health of the 25-30 million Americans living with rare diseases, including the U. S. Congress, FDA, and National Institue of Health.
55 Kenosia Avenue, Danbury, CT 06810
617-934-6389
Health
Danbury
