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Rare Disease Information

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In the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans. There are approximately 6,800 such diseases, according to the National Institutes of Health (NIH). While each disease is rare, when considered together they affect nearly 30 million Americans or almost 1 in 10 people. There are certain challenges that all patients and families affected by rare diseases share.

As the organization representing these shared interests and concerns, NORD seeks to increase awareness of all rare diseases and to assist the organizations serving patients and families affected by specific rare diseases.

Search NORD’s Rare Disease Database

This database provides reports in patient-friendly language on more than 1,200 rare diseases. Each report provides a basic introduction with links to resources for additional information and assistance.

Search NORD’s Patient Organizations Database

Search this database by disease name to find a patient organization or other sources of help.

Subscribe to the Rare Disease Database

Many hospitals, schools, companies, and universities subscribe to NORD’s Rare Disease Database. A subscription provides 24/7 access to full-text versions of all 1,200+ reports in the database.

Learn what it is like to live with a rare disease

Read the real-life stories of patients and families to learn about rare diseases and their impact on the daily lives of those affected.

Other Resources and Tools

View links to other relevant resources.

 
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