NORD Programs & Services
NORD serves all stakeholders in the rare disease community, including patients and their families, patient organizations, researchers, medical professionals, and companies developing orphan products. We also work 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 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 , over 180 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.
Research Grant Program
Through its Research Program, NORD provides seed money in small grants to academic scientists. If these studies produce promising data, the researchers may go on to obtain government grants or commercial sponsorship that, ultimately, could lead to new diagnostics or treatments for rare diseases. Research grants are awarded to scientists following a competitive proposal process. Awards are made in consultation with NORD’s Medical Advisory Committee.
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.
International Education and Advocacy
Recognizing that rare diseases are a global public health challenge, NORD has entered into a strategic partnership with the European Organization for Rare Diseases (EURORDIS).
For more information on NORD’s programs and services please contact us here.