Research Guides: Rare Diseases Information Toolkit: About Rare Diseases

Learn More about Rare Diseases

EURORDIS: What is a Rare Disease?
Learn about the impact of and key facts and statistics about rare disease.
National Center for Advancing Translational Sciences: Rare Diseases Information
Explore rare disease resources, learn about the latest research, and find ways to get involved in the rare disease community.

Canadian Organization for Rare Disorders
CORD is Canada's national network for organizations representing all those with rare disorders.
Genetic Alliance: DiseaseInfoSearch
Temporarily under construction
EURORDIS Rare Diseases Europe
EURORDIS advocates for individuals living with rare diseases. They provide information on diseases and patient organizations.
Genetics and Rare Disease Information Center
GARD provides easy-to-understand rare disease information in English and Spanish.
MedlinePlus.gov: Genetic Conditions
MedlinePlus provides an alphabetical index where you can explore the signs and symptoms, genetic cause, and inheritance pattern of various health conditions.
National Organization for Rare Disorders: Rare Diseases Database
NORD provides health information for rare disease patients and their caretakers. In addition to information on conditions, you can also find health care providers and clinical trials.
Orphanet
This site provides information on rare diseases, an inventory of drugs that may be used fo treatment, and directories of facilities and doctors that specialize in rare disease.