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Contact Us

Health Related Questions
Visit the Diseases section on this site for information about a specific disease or condition.  If you can’t find the answers to your questions on our Website, you may want to contact an information specialist at the Genetic and Rare Diseases Information Center.  We cannot make a diagnosis or give medical advice, but we can provide information.

Genetic and Rare Diseases Information Center
P.O. Box 8126
Gaithersburg, MD  20898-8126
Toll-free:  (888) 205-2311
TTY:  (888) 205-3223
International Telephone Access Number:  (301) 251-4925
Email Form:

For other health-related questions, you can search the National Library of Medicine’s (NLM)  Health Hotlines database of health-related organizations that operate toll-free numbers with descriptions of over 14,000 biomedical information resources, including organizations, databases, research resources, etc.

General Questions, Comments
We welcome your comments and suggestions on how we can make this Web site a better resource for you.   Please send your comments to

Office of Rare Diseases Research
National Center for Advancing Translational Sciences (NCATS)
National Institutes of Health
6701 Democracy Boulevard
Suite 1001, MSC 4874
Bethesda, MD 20892
For courier use (Bethesda, MD 20817)
(301) 402-4336  (voice)
(301) 480-9655 (fax)

Use the Staff Directory if you would like to contact a specific ORDR staff member.

The ORDR regularly updates its email mailing list. If you would like to receive periodic updates and important news items from ORDR, please send your request to and include your name, and organization name (if applicable) and email address.

NCATS Contact information

NCATS Information Officer
Office of Policy, Communications and Strategic Alliances
Phone: 301-435-0888
Fax: 301-480-3558
Contact page:

Locate healthcare providers and researchers who have knowledge of your condition.

Navigate the process of trying to obtain a diagnosis.