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National Organization for Rare Disorders
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National Organization for Rare Disorders (NORD): 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.  Vision and guiding principles on which advocacy initiatives are based: A national awareness and recognition of the challenges faced by people living with rare diseases and the associated costs to society. A nation where people with rare diseases can secure access to diagnostics and therapies that extend and improve their lives. A social, political, and financial culture of innovation that supports both the basic and translational research necessary to create diagnostic tests and therapies for all rare disorders. A regulatory environment that encourages development and timely approval of safe and effective diagnostics and treatments for patients with rare diseases.  

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