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National Organization for Rare Disorders (NORD)
"The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare ""orphan"" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
NORD Programs & Services
NORD provides information about rare diseases through its publications, website, and other educational offerings. One of its most important resources is the Rare Disease Database, a compendium of 1,200 rare disease reports developed for patients and their families that includes information on symptoms, causes, treatments, clinical trials, and links to other sources of help. NORD also publishes a small collection of physician’s booklets on selected rare diseases. Each year, NORD responds to hundreds of thousands of telephone, mail, and email inquiries from individuals, families, teachers, social workers, and medical professionals.
Patient Advocacy and Mentorship Programs – NORD works collaboratively with its growing roster of member organizations, 150 organizations at present, representing them at several large medical meetings each year and providing opportunities for them to join NORD in advocacy on behalf of their members. NORD also provides mentoring services to assist in the establishment and growth of disease-specific organizations.
Medical Assistance Programs – NORD partners with pharmaceutical and biotechnology companies to ensure that certain vital medications are available to uninsured or under-insured individuals. NORD’s programs have set the standard for fairness, equity, and unbiased eligibility and earned high marks from patient communities, pharmaceutical companies, healthcare professionals, government officials, and the public.
NORD also administers co-pay assistance programs for people who can’t afford their insurance co-pays; early access programs that, following FDA guidelines, allow patients with serious or life-threatening diseases to access investigational products under certain conditions; and travel assistance programs, since patients with rare diseases often must travel great distances to participate in clinical trials.
NORD Washington Office
1779 Massachusetts Avenue, Suite 500
Washington, DC 20036
Phone: (202) 588-5700
Fax: (202) 588-5701