We are compiling a list of great websites to help you understand genetics and genetic test results. If you would like to suggest other resources for this section, please feel free to send us an email!
Learning Resources from the NHGRI
Lots of very good resources from the NHGRI, including major sections about The Human Genome Project, Facts Sheets, and educational resources for teachers and students.
NHGRI Talking Glossary
Talking glossary of genetic terms developed by the National Human Genome Research Institute. A huge range of definitions is provided by researchers from around the world.
Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics. Their website is home to a range of educational resources for ‘knowledgeable consumers and health professionals, particularly those without specialty training in genetics’.
From the U.S. National Library of Medicine, MedlinePlus provides useful information about all aspects of health, including over 900 diseases. Resources include a medical encyclopedia, medical dictionary, and tutorials about common conditions, tests, and treatments.
Genetics Home Reference
Consumer-friendly information about the effects of genetic variations on human health. Federally-supported resources, include reviews of more than 800 genetic diseases and more than 1000 genes.
Find a Genetic Counselor
The National Society of Genetic Counselors have a searchable database of genetic counselors. Their website also includes some education materials for patients and healthcare professionals.
Help Me Understand Genetics
Help Me Understand Genetics is a handbook from the National Institutes of Health that contain useful information about genetics in clear language and provides links to even more online resources. The entire handbook can also be downloaded as a pdf.
Genetic and Rare Diseases Information Center (GARD) A joint project from The Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI) that provides searchable information about genetic conditions and rare diseases. It also includes a list of FDA-Approved drugs and other medical products for treating rare disease.
National Organization for Rare Disorders – Resources for Parents/Families
The National Organization for Rare Disorders (NORD) is a volunteer organization dedicated to empowering the rare disease community. Again, they have some very nice web resources.
Ethical, Legal and Social Implications Research Program
The ELSI Research Program supports examinations and investigations of the ethical, legal and social implications of genetics research.
Genetic Information Nondiscrimination Act of 2008
The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health.