Education and Resources

Genetics can affect your health, family planning, and medical care. The resources below are for families and individuals seeking to better understand genetic conditions, testing, find support services and trusted information.

General Genetics

• American Society of Human Genetics: Genetic Basics: 6 things you should know
  Covers key genetics topics like DNA, human variation and diversity, inheritance, family history, genetic testing, and medical genetics.
• Centers for Disease Control & Prevention (CDC), Genomics and Your Health
  Offers comprehensive information on how genetics impact individual health. The resources cover genetics basics, genetic counseling, genetic testing, epigenetics, pharmacogenomics, and precision health.
• Cancer Simulations Let's Talk: Sharing Info About Your Family Cancer Risk (CDC)
  Helps individuals practice talking about their genetic risk with family members.
• Genetic Alliance
  An organization helping individuals and families navigate genetic conditions through education, advocacy, and support.
• Genetic Support Foundation
  An organization providing up-to-date genetic information, resources, and services to patients, providers, and the public.

How to Find a Genetics Professional

• Washington’s Genetics Provider List
  A list of genetic providers with location and contact information.
• The National Society of Genetic Counselors (NSGC)
  Searchable directory of genetic counselors in the U.S. and Canada. You can search by location, name, area of practice or specialization, and by ZIP Code.
• The American Board of Genetic Counseling (ABGC)
  Worldwide directory of certified genetic counselors. You can search by practice area, name, organization, or location.
• The Canadian Association of Genetic Counsellors (CAGC)
  A directory of genetic counselors in Canada. You can search by name, distance from an address, province, or services.

General Support and Information

Mountain State Regional Genetic Network

Resources and videos about genetics in English and Spanish:

• Genetic Information, resources, and videos (English)
• Genetic Information, resources, and videos (Spanish)
• Minority Genetic Professional Network
  Genetic Counseling Patient Resources (PDF in Spanish)

National Human Genome Research Institute (NHGRI)

• Genetic Information Non-Discrimination Act Patient Resource
  An overview of the Genetic Information Non-Discrimination Act, which protects patients against discrimination by their health insurer or employer based on a genetic diagnosis.
• NHGRI genetic glossary (English and Spanish).

Medline Plus

• Genetics Section
  Trusted health information website from the National Library of Medicine. You can use Medline Plus to learn about genetic conditions, their causes, inheritance, testing options, patient support and advocacy groups, and research opportunities.
• ThinkGenetic Foundation
  An organization supporting people living with, or at risk for, genetic conditions through education, information, access to genetic counseling and testing, and advocacy.

Reproductive, Prenatal, and Childhood

• American College of Obstetricians and Gynecologists (ACOG)
  Patient-friendly resources on genetic disorders and pregnancy, carrier screening for spinal muscular atrophy, routine tests during pregnancy, cystic fibrosis: prenatal screening and diagnosis, carrier screening, repeated miscarriages, multiple pregnancy, prenatal genetic diagnostic tests, prenatal genetic screening tests.
• Baby’s First Test
  Information in multiple languages for families on newborn screening, including specific conditions, state-specific programs, and educational materials.
• Birth Defect Research for Children
  A nonprofit organization providing parents and expectant parents with information about birth defects and support services for their children.
• Expecting Health
  Provides pregnancy-related genetic information, including newborn screening.
• Letter Case (National Center for Prenatal and Postnatal Resources)
  Offers free information on multiple genetic conditions.
• March of Dimes
  Resources for new parents, including NICU support, mental health support, and Supportive Pregnancy Care – a group prenatal support group.
• Mother to Baby
  Information about how genetic conditions, medications, and environmental factors can affect pregnancies and breast and chest feeding.

Cancer and Genetics

• American Indian Cancer Foundation
  Information and resources that center Native experiences and cancer burden, to help address the cancer inequities experienced by Native communities.
• American Cancer Society
  National nonprofit dedicated to eliminating cancer.
• Genes and Cancer
• Cancer-related Genomic Testing and Genetic Testing
• Genetic Counseling and Testing
  • Breast Cancer Risk
  • Colorectal Cancer Risk
  • Prostate Cancer Risk
  • Melanoma Risk
• Family Cancer Syndromes
• Talking with Family Members About Genetic Testing
• What Should I Know Before Getting Genetic Testing?
• Pharmacogenomics testing to guide treatment options
• Bright Pink
  Helps women and people assigned female at birth understand their breast and ovarian cancer risks. Bright Pink also provides financial and strategic support to breast and ovarian health initiatives to save women’s lives.
• Colon Cancer Coalition (Understanding Your Family History)
  A national nonprofit with a mission to end colon cancer through increasing screening rates and education.
• Facing Hereditary Cancer Empowered
  Supports individuals and families affected by hereditary cancers.
• George Washington University: Cancer Center Training & Technical Assistance Program
  CDC funded program that offers training and technical assistance to comprehensive cancer control programs and partners. Their Cancer Awareness Toolkits are linked above.
• Lynch Syndrome International
  Education and resources for individuals and families better navigate their cancer risks.
• National Comprehensive Cancer Network Guidelines for Patients (NCCN)
  Expert information presented in plain language with visuals, charts, and definitions to empower people with various cancer diagnoses to discuss the best treatment options with their clinicians. NCCN provides genetic-focused resources such as genetic testing for hereditary breast, ovarian, pancreatic, and prostate cancers.

Cardiovascular Disease

• American Heart Association
  Focuses on heart health, disease prevention, and research, with resources on several genetic forms of heart disease, such as familial hypercholesterolemia, hypertrophic cardiomyopathy, and long QT syndrome.
• The Family Heart Foundation
  Supports families with familial hypercholesterolemia and other genetic heart conditions.

Hypermobility

• Ehlers Danlos Society
  Offer education and resources for people with Ehlers-Danlos syndromes and hypermobility spectrum disorders.

Rare Diseases

• EveryLife Foundation for Rare Disease
  Advocates for better policies, research, and treatment for rare diseases.
• Genetic and Rare Diseases Information Center (GARD)
  Provides easy-to-understand information and Information Specialist services. You can find information about a rare disease, navigate information throughout the diagnostic journey, and discover resources, disease experts, or clinical studies.
• Global Genes
  A nonprofit organization that helps individuals with rare diseases find resources, support groups, and research opportunities.
• National Organization for Rare Disease
  Help finding a rare disease expert, information, resources, and support navigating your disease. NORD supports individuals and families afford medications, reduce insurance costs, and navigate claim denials.