Who is NORD and what can they do for us?

From the NORD (National Organization of Rare Disorders) wedsite:

Vision Statement

NORD’s vision and guiding principles on which our advocacy initiatives are based:

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.

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

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