Resources
Links to reliable genetics resources on the web.
- Ask a Geneticist (Stanford University at The Tech Museum)
- Cancer Genetics Services Directory (National Cancer Institute)
- Contact a Family (UK)
- Genetic Alliance
- Genetic and Rare Diseases Information Center (GARD)
- Genetic Support Foundation
- Global Genes: RARE Toolkits
- Making Sense of Your Genes: A Guide to Genetic Counseling (NCBI Bookshelf)
- March of Dimes
- MyGene2 (University of Washington, Center for Mendelian Genomics)
- National Organization for Rare Disorders (NORD)
- National Society of Genetic Counselors: Patient Resource Site
- RareConnect
- American Kidney Fund
- American Society of Clinical Oncology: Cancer.Net
- Caring Voice Coalition
- Healthfinder.gov
- HealthWell Foundation
- Help with Travel Costs (Genetic and Rare Diseases Information Center)
- Leukemia and Lymphoma Society
- Lupus Foundation of America
- Lymphoma Research Foundation
- National Human Genome Research Institute
- National Organization for Rare Disorders (NORD): Other Financial Assistance
- National Organization for Rare Disorders (NORD): Patient Assistance Programs
- Patient Access Network Foundation
- Patient Advocate Foundation
- Tips for Finding Financial Aid (Genetic and Rare Diseases Information Center)
- Cancer Genetics Overview (National Cancer Institute)
- Frequently Asked Questions About Genetic and Genomic Science (National Human Genome Research Institute)
- Frequently Asked Questions About Genetic Disorders (National Human Genome Research Institute)
- Genetics and Genomics for Patients and the Public (National Human Genome Research Institute)
- Genetics: The Basics (JAMA Patient Page)
- MedlinePlus Health Topic: Genes and Gene Therapy (U.S. National Library of Medicine)
- MedlinePlus Health Topic: Genetic Counseling (U.S. National Library of Medicine)
- Personal Genetics Education Project (Harvard University)
- Public Health Genomics (Centers for Disease Control and Prevention)
- The Basics on Genes and Genetic Disorders (TeensHealth from the Nemours Foundation)
- Understanding Genetics: A District of Columbia Guide for Patients and Health Professionals (NCBI Bookshelf)
- Baby's First Test
- EuroGentest
- Frequently Asked Questions About Genetic Testing (National Human Genome Research Institute)
- Genetic Testing (KidsHealth from Nemours)
- Genetic Testing for Hereditary Cancer Syndromes (National Cancer Institute)
- Genetic Testing Registry (National Center for Biotechnology Information)
- MedlinePlus Health Topic: Genetic Testing
- CoRDS: Coordination of Rare Diseases at Sanford
- Genome Connect: The ClinGen Patient Portal
- List of Registries (National Institutes of Health)
- NORD-FDA Natural History Study Project
- PEER: Platform for Engaging Everyone Responsibly (Genetic Alliance)
- Rare Diseases Clinical Research Network
- Registries for Evaluating Patient Outcomes: A User's Guide (third edition, 2018): 21st Century Patient Registries (NCBI Bookshelf)
- Registry of Patient Registries (Agency for Healthcare Research and Quality)
- A Closer Look at Chromosomes (U.S. National Library of Medicine)
- A Revolution In Progress: Human Genetics and Medical Research (National Institutes of Health)
- Arizona State University: Ask a Biologist
- BioInteractive (Howard Hughes Medical Institute)
- Bookshelf (National Center for Biotechnology Information)
- Deciphering the Genetic Code: Marshall Nirenberg (National Institutes of Health)
- DNA From the Beginning (Cold Spring Harbor Laboratory)
- Dolan DNA Learning Center (Cold Spring Harbor Laboratory)
- Explore Genetics Home Reference
- G2C2: Genetics/Genomics Competency Center for Education
- G3C: Global Genetics and Genomics Community
- Gallery of Illustrations in the Public Domain (Genetics Home Reference)
- GeneEd: Teacher Resources
- Genetic Education Modules for Teachers (National Human Genome Research Institute)
- Genetic Science Learning Center (University of Utah)
- Genetics Home Reference Learning Activity: Explore
- GeneticTools: Teaching Cases (University of Washington)
- Genomics Education Partnership (Washington University, St. Louis)
- Learn at Genome: Unlocking Life's Code (Smithsonian National Museum of Natural History)
- MyDNAi Teacher Guide (Dolan DNA Learning Center)
- NIH Curriculum Supplement: Human Genetic Variation
- NIH Curriculum Supplement: Rare Diseases and Scientific Inquiry
- NIH Curriculum Supplement: Using Technology to Study Cellular and Molecular Biology
- North Carolina DNA Day: Modules
- North Carolina DNA Day: On Demand
- NOVA Labs: RNA Game
- Office of Science Education (National Institutes of Health)
- Online Education Kit: Understanding the Human Genome Project (National Human Genome Research Institute)
- Profiles in Science (National Library of Medicine)
- Resources for Science Teachers (U.S. National Library of Medicine) (PDF)
- Science Education Partnership Award: Evaluation Resources
- Teach.Genetics (University of Utah)
- Teaching Resources (Genetic and Rare Diseases Information Center)
- The Gene Scene (American Museum of Natural History)
- The New Genetics (National Institute of General Medical Sciences)
- Wellcome Trust Sanger Institute's Your Genome
- ACT Sheets and Algorithms for Newborn Screening (NCBI Bookshelf)
- American Society of Human Genetics
- Caring for Your Patient with a Rare Disease (Genetic and Rare Diseases Information Network)
- Centre for Genetics Education (Australia)
- Genetic Metabolic Dieticians International
- Genetics and Genomics for Health Professionals (National Human Genome Research Institute)
- Genetics Society of America
- HealthReach: Health Information In Many Languages (U.S. National Library of Medicine)
- MedGen (National Center for Biotechnology Information)
- Method for Introducing a New Competency in Genomics (MINC)
- Multilingual Resources (Centre for Genetics Education)
- National Center for Education in Maternal and Child Health (Georgetown University)
- National Society of Genetic Counselors
- National Society of Genetic Counselors: Practice Guidelines
- Newborn Screening Coding and Terminology Guide (U.S. National Library of Medicine)
- Online Mendelian Inheritance in Man (OMIM)
- Orphanet: The Portal for Rare Diseases and Orphan Drugs
- PDQ Cancer Information Summaries: Genetics (National Cancer Institute)
- PubMed (access to MEDLINE citations from the U.S. National Library of Medicine)
- Table of Pharmacogenomic Biomarkers in Drug Labeling (U.S. Food and Drug Administration)
- The Jackson Laboratory: Clinical Topics
- The Jackson Laboratory: Course Offerings
- Atlas of Genetics and Cytogenetics in Oncology and Haematology
- Division of Extramural Research (National Human Genome Research Institute)
- ExPASy Proteomics Server (Swiss Institute of Bioinformatics)
- Frequently Asked Questions About Clinical Research (National Human Genome Research Institute)
- Genetic and Rare Diseases Information Center (GARD) Resources for Researchers (video)
- Genomes2People
- GQuery (National Center for Biotechnology Information)
- GTEx Portal
- HUGO Gene Nomenclature Committee (HGNC)
- Human Genome Project Timeline (yourgenome.org)
- Human Genome Resources (National Center for Biotechnology Information)
- Joint Genome Institute (U.S. Department of Energy)
- MutaBind (National Center for Biotechnology Information)
- NCBI Gene (National Center for Biotechnology Information)
- UniProt
- ClinicalTrials.gov (National Center for Biotechnology Information)
- How to Get Involved in Research (Genetic and Rare Diseases Information Center)
- MedlinePlus Health Topic: Clinical Trials
- National Cancer Institute: Find NCI-Supported Clinical Trials
- NIH Clinical Center Clinical Research Volunteer Program
- NIH Clinical Research Trials and You
- Participate in Research (UW School of Medicine)
- ResearchMatch
- Toolkit for Patient-Focused Therapy Development (National Center for Advancing Translational Sciences)
- U.S. Food & Drug Administration: What Are the Different Types of Clinical Research?
- Undiagnosed Diseases Network
- 1000 Genomes Project (The International Genome Sample Resource)
- Catalogue of Somatic Mutations in Cancer (COSMIC)
- ClinGen Clinical Genome Resource
- ClinVar (National Center for Biotechnology Information)
- Database of Genomic Variants
- Database of Genotype and Phenotype (dbGaP) (National Center for Biotechnology Information)
- dbVar — Database of Genomic Structural Variation (National Center for Biotechnology Information)
- GenBank: The National Institutes of Health's Genetic Sequence Database
- GENE-TOX, the Genetic Toxicology Data Bank (National Library of Medicine)
- Genome Reference Consortium (National Center for Biotechnology Information)
- Genomes OnLine Database
- Genomic Data Commons (National Cancer Institute)
- GWAS Catalog (NHGRI-EBI)
- Human Genetic Mutation Database (The Institute of Genetics in Cardiff, Wales)
- Human Genome Variation Society
- Monarch Initiative
- NEIBank (National Eye Institute)
- Reactome: A Curated Knowledgebase of Biological Pathways
- RefSeqGene (National Center for Biotechnology Information)
- UCSC Genome Bioinformatics Site (University of California, Santa Cruz)
- Bioethics Information Resources (U.S. National Library of Medicine)
- Genome Statute and Legislation Database (National Human Genome Research Institute)
- National Society of Genetic Counselors: Position Statements
- Office of Science Policy (National Institutes of Health)
- Policy Statements from the American College of Medical Genetics and Genomics
- Policy, Legal and Ethical Issues in Genetic Research (National Human Genome Research Institute)
- GeneReviews Illustrated Glossary (National Center for Biotechnology Information)
- Glossary of Common Site Terms (ClinicalTrials.gov)
- Medical and Science Glossaries (Genetic and Rare Diseases Information Center)
- MedlinePlus: Health Literacy (U.S. National Library of Medicine)
- Merck Manual Consumer Version: Understanding Medical Terms
- National Cancer Institute Dictionary of Cancer Terms (National Institutes of Health)
- National Cancer Institute Dictionary of Genetics Terms (National Institutes of Health)
- National Society of Genetic Counselors: Glossary
- Talking Glossary of Genetic Terms (National Human Genome Research Institute)
- Understanding Medical Words: A Tutorial from the National Library of Medicine
- What Did My Doctor Say? (Medical Library Association)
- Finding Free Full Text Materials (U.S. National Library of Medicine)
- How to Read a Scientific Paper (Science Buddies)
- Resources for Finding and Accessing Scientific Papers (Science Buddies)
- The Basics of Scientific Research Studies (Health Compass)
- Tools for Understanding: Scientific Journal Articles (American Association for Cancer Research)
- Tutorial: How to Read a Scientific Paper (Purdue University Libraries)
- Understanding Scientific Studies (European Food Information Council)
- Finding Reliable Health Information Online (National Human Genome Research Institute)
- MedlinePlus Health Topic: Evaluating Health Information (U.S. National Library of Medicine)
- MedlinePlus Quality Guidelines (U.S. National Library of Medicine)
- MedlinePlus: Guide to Healthy Web Surfing (U.S. National Library of Medicine)
- Trust It or Trash It? (Genetic Alliance)
- Using Trusted Resources (National Cancer Institute)
- American Medical Writers Association
- National Human Genome Research Institute: Communications and Public Liaison Branch
- PlainLanguage.gov: Plain Language in the Sciences
- Prevalence and Incidence of Rare Diseases (Orphanet) (PDF)
- U.S. National Library of Medicine: Office of Communications and Public Liaison