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National Organization for Rare Disorders, Inc. Overview
NORD represents 1 in 10 Americans who have rare diseases with programs of advocacy, education, research and patients services. It serves as the voice of the rare disease community on important issues of public policy. It also provides information on rare diseases in understandable language for patients and their families, with referrals to support groups and other helpful resources. It encourages research on new diagnostics and treatments and administers patients assistance programs. NORD mentors rare disease support groups so that they can more effectively help their members. It serves as the point of connection between the patient community and key government agencies, such as the National Institutes of Health (NIH) and Food and Drug Administration (FDA). Nearly 150 patient organizations are members of NORD and look to NORD for guidance, mentoring and leadership.
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A representative from NORD made me cry today when applying for financial assistance for my son's rare disorder. I could not believe how insensitive she was. Then, when I called to see if I could work with someone else, the supervisor who later contacted me only left the main number so I could not ...
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As a Father of a daughter with a rare disease, I can't begin to describe how important NORD has been to our family. When Gaby was diagnosed in 2006 we had no where to turn with a condition that affects 1 in 2 Million. Until we found NORD! NORD is the mother ship for all us very small rare ...
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I am a new Board member of NORD who is absolutely focused on ensuring that NORD ensures its relevance and importance to the patient community and the patient organizations that it serves.
NORD knows that it needs to do more than be the protector of the Orphan Drug Act. It has a new leadership team...
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