Who is NORD and what can they do for us?

Vision Statement

NORD’s vision and guiding principles on which our 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.

Mission Statement

The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique 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.

What is A Rare Disorder?

Any disease affecting fewer than 200,000 Americans is considered rare. There are nearly 7,000 such diseases affecting nearly 30 million Americans. NORD is here to represent all patients and families in the U.S. affected by rare diseases.

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Click here to visit NORD and access reference materials from their rare disease database. Here is the entry for Parry Romberg Syndrome.