Medical Genetics Information
Resources for Consumers

Please send any comments concerning this page to Sheila Gorman.

I. Basic Genetic Concepts

1. Aetna InteliHealth Guide on Genetic Testing - This site aims to help consumers understand and make informed decisions about genetic testing. The guide was created in conjunction with Harvard Medical School and provides basic information on genetic testing as well as case studies.
   
   
2. DNA from the Beginning - An animated primer on the basics of DNA, genes, and heredity. Produced by Dolan DNA Learning Center, Cold Spring Harbor Laboratory.
   
   
3. Genes and Diseases - An digital textbook sponsored by the National Institutes of Health. It contains brief summaries of the molecular basis for genetic disease for approximately 80 genes linked to human disorders.
   
   
4. Genomics and Its Impact on Medicine and Society - A primer produced by the U.S. Department of Energy's Human Genome Program.
   
   
5. Medicine and the New Genetics - A genetics informational site produced by the Department of Energy and the National Institute of Health, it covers the fundamentals of human genetics, history, and ethics, and provides extensive links to gene testing, therapy, counseling, and educational and professional societies.
   

II. Resources for Patients, Families, and Care Givers

1. Combined Health Information Database (CHID) - CHID is a bibliographic database produced by health-related agencies of the Federal government. CHID lists a wealth of health promotion and education materials and program descriptions that are not indexed elsewhere. New records are added quarterly. CHID has a special database on medical genetics, rare disorders, and maternal and child health.
   
   
2. DHMC Medical Genetics Web Resources for Consumers
   
   
3. FORCE: Facing our Risk of Cancer Empowered - FORCE is a nonprofit organization for women who are at high risk of getting breast and ovarian cancers due to their family history and genetic status, and for members of families in which a BRCA mutation may be present.
   
   
4. Genetics Education Center - Developed by the University of Kansas Medical Center, this site offers comprehensive links to a wide variety of genetics resources for professionals, patients, and families.
   
   
5. Genetics Home Reference - consumer-friendly information about the effects of genetic variations on human health. Developed by the U.S. National Library of Medicine.
   
   
6. Genetics Resources on the Web (GROW) - GROW seeks to provide an effective forum that encourages communication and collaboration among individuals interested in web-based provision of high-quality information about human genetics, especially those aspects of human genetics dealing with health, to health professionals and the public.
   
   
7. How to Evaluate Health Information on the Net - A site developed by the National Cancer Institute, it provides guidelines for site evaluation, applicable for all health-related sites.
   
   
8. Lab Tests Online - Lab Tests Online has been designed to help you, as a patient or caregiver, to better understand the many clinical lab tests that are part of routine care as well as diagnosis and treatment of a broad range of conditions and diseases. The site is the product of a collaboration of professional societies representing the laboratory testing community.
   
   
9. Medicine and the New Genetics - A genetics informational site, produced by the Department of Energy and the National Institute of Health, it covers the fundamentals of human genetics, history, and ethics, and provides extensive links to gene testing, therapy, counseling, and educational and professional societies.
   
   
10. MEDLINEPlus: Genetic Disorders - Produced by the National Library of Medicine, this site provides access to reliable full-text information on genetic disorders and links to organizations.
    
    
11. Mountain States Genetics Network - A directory of on-line genetic support groups organized and maintained by the Mountain States Genetics Network. This collection of support groups is alphabetically arranged by disease and provides mechanisms for communicating with other people with similar interests and concerns.
    
    
12. National Newborn Screening and Genetics Resource Center - This site provides information and resources in the area of newborn screening and genetics to benefit health professionals, the public health community, and consumers.
    
    
13. National Organization for Rare Disorders (NORD) - A federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
    
    
14. Office of Rare Diseases - The Office of Rare Diseases is part of the National Institutes of Health. It provides information on more than 6,000 rare diseases.
    
    
15. Rare Genetic Diseases - This site is organized by Family Village, a global electronic community. It includes informational resources on specific diagnoses, adaptive products, adaptive recreational activities, education, health issues, disability-related media, and more.