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?
A rare or "orphan" disease affects fewer than 200,000 people in the United States. There are more than 6,000 rare disorders that, taken together, affect approximately 25 million Americans. For almost twenty years, NORD has served as the primary non-governmental clearinghouse for information on rare disorders. NORD also provides referrals support groups and other sources of assistance.

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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.

Here are some additional NORD links:

• NORD's Clinical Research Program
• Medication Assistance Programs
• Details of Current Grants