Name | Title | Contact Details |
---|---|---|
Sarah Zelhart |
Director of National Accounting, Compliance and Financial Support | Profile |
The National Organization for Rare Disorders, 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 280 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 sponsor of Rare Disease Day in the U.S., an observance day held on the last day of February each year worldwide. 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.
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