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National Organization for Rare Disorders (NORD) 
NORD is a 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 programmes of education, advocacy, research, and service.

Offices of Rare Diseases 
Published by National Institute of Health (NIH) contains: dictionary of rare diseases, rare disease information, and research and clinical trials on rare diseases.

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