This website has been maintained by SERN through a cooperative agreement funded by HRSA. Funding for this project has been discontinued, and thus this website will be ending on 5/31/24.

Some website content will be available in other locations, to be announced.

National Organizations

National Organization for Rare Disorders (NORD)

NORD is an organization that provides resources for patients and families with rare disorders. Here you can find webinars, educational resources, a list of rare disorders, and other materials to assist with learning more about rare disorders.

Genetic and Rare Diseases (GARD) Information Center

GARD knows that understanding medical terms and technology related to a genetic disorder can be difficult. The Center has developed a glossary of medical terms to help patients and their families understand the language used.

Newborn Screening Disorder Fact Sheets

Provides information on disorders screened via the newborn screening program. These fact sheets were developed for families who want to learn more about a disorder.