Research Guides: Genetic Counseling: Consumer Health Resources

Key Resources

Genes in Life
Website created by the nonprofit organization Genetic Alliance to teach consumers about genetics as it relates to them.
Genetic Alliance
A non-profit organization dedicated to quality genetic resources and services for patients and families.
Genetics and Rare Diseases Information Center
GARD is a division of the National Institutes of Health The website provides information on a variety of rare and genetic conditions. Users can search by disease name or by category.
Genetics Home Reference
Consumer resource from the National Library of Medicine that provides information about the effects of genetic variations on human health.
Note: Genetics Home Reference is now a part of MedlinePlus and as of October 1, 2020 Genetics Home Reference will only be available at:
https://medlineplus.gov/genetics/
Global Genes
Global Genes is a rare disease patient advocacy organization. The site contains a variety of resources related to living with rare diseases or advocating for patients with rare diseases.
MedlinePlus
Though a general health information website, this database sponsored by the U.S. National Library of Medicine and the National Institutes of Health provides consumer health information on a variety of genetic diseases.
National Organization for Rare Disorders
NORD is a non-profit organization dedicated to advocating for patients with rare diseases. The website contains in-depth information on a variety of rare/genetic diseases. There is also information on patient organization and support.
Talking Glossary of Genetic Terms
This resource from the National Human Genome Research Institute explains genetic terms using written and spoken definitions, as well as images and animations when available.

Evaluating Resources

Evaluating Internet Health Information: A Tutorial from the National Library of Medicine
This site provides a 16 minute tutorial about how to evaluate health information found on the Web.
Find Good Health Information
Provides tips for finding reliable health information online
MedlinePlus Guide to Health Web Surfing
Provides information on how to evaluate health information Web sites.

Books

The Gale Encyclopedia of Genetic Disorders by Tracie Moy; Laura Avery; Gale (Editor)
Call Number: RB155.5 .G35 2016
ISBN: 9781410332813
Publication Date: 2016-04-29
A revision of the 2010 edition, this three-volume set is a unique source for information on diseases and conditions of genetic origin. The Gale Encyclopedia of Genetic Disorders serves as an informative, accessible source of information on genetic disorders and common genetic concepts and practices. It avoids medical jargon, using language laypersons can understand while still providing thorough coverage of each disorder and concept.
Genetic Disorders Sourcebook by Keith Jones (Editor)
Call Number: RB155.5 .G455 2016
ISBN: 078081522x
Publication Date: 2016-07-01
Provides basic consumer health information about disorders caused by gene and chromosome abnormalities and those with genetic and environmental components, genetic testing, treatment research, and guidance for parents of children with special needs. Includes index, glossary of related terms, and other resources.