U.S. Department of Health and Human Services

Menu

Rare Diseases

Genetic Testing: How it is Used for Healthcare- (PDF)

You may want to learn about genetic testing if you have a family history of inherited diseases or belong to an ethnic group with a higher risk of a specific inherited disease. Read this fact sheet to find out about genetic testing.

Review Date: August 04, 2011

NIH Office of Rare Diseases Research

NORD’s Patient Assistance Programs

Find patient assistance programs that help patients with rare diseases obtain life-saving or life-sustaining medication they could not otherwise afford.

Review Date: February 05, 2013

National Organization for Rare Disorders

Patient Organizations Database

Enter an organization name or the disease name to search for organizations that help people with rare diseases.

Review Date: March 22, 2011

National Organization for Rare Disorders

Prader-Willi Syndrome Support

Call 1-800-926-4797 for information and support for families after the initial diagnosis of Prader-Willi syndrome, a genetic cause of life-threatening obesity in children.

Review Date: January 29, 2012

Prader-Willi Syndrome Association - USA

Tips for Those With an Undiagnosed Condition

Can’t find answers for an undiagnosed condition? The following information may help navigate through the process of trying to obtain a diagnosis.

Review Date: December 01, 2014

Genetic and Rare Diseases Information Center

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®.