Resources


Glossary

Talking Glossary of Genetic Terms 
A great source for looking up unfamiliar vocabulary. 

Genetics: Basic Information

Animated Genome
Take an amazing animated journey and explore what a genome is and why it matters to each of us.

DNA Museum Exhibit
The exhibition was developed through a partnership between the National Museum of Natural History and the National Human Genome Research Institute and was originally available at the Smithsonian Museum in Washington, DC. Now the exhibit is traveling across the United States.

Genetics Home Reference
Consumer-friendly information about the effects of genetic variations on human health.  Offers a handbook for learning about genetics and its relationship to health.

Surgeon General Family History Tool
A web based tool to help you organize family history information and save/print it out to share with your healthcare provider or family members

The New Genetics: A Primer 
Provides science education booklets which explain the role of genes in health and disease, the basics of DNA and its molecular cousin RNA, and new directions in genetic research.

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Genetic Testing

Genetic Testing Registry
Provides information about genetic tests and laboratories performing them.  The overarching goal of GTR is to advance public health and research into the genetic basis of health and disease.

Telling Stories 
This UK resource, now compiled of 100 stories, was developed to promote understanding among health professionals of the impact genetics and genomics has on real life and its relevance to healthcare practice. 

23 and me 
Learn about the availability of genetic testing using interactive tools to share, compare, and discover through personalized genetic reports.  See what your DNA says about your health, traits, and ancestry through commercialized saliva testing.

Understanding Your Genome (UYG) 
An educational movement that engages individuals to learn about the untapped potential of DNA to improve health care. Explore the site to see where upcoming conferences will be held and where whole genome sequencing testing will be available. 

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Children

Baby's First Test 
Houses the nation's newborn screening clearinghouse with current educational and family resources about newborn screening at the local, state, and national levels.  Information targeted for parents and health professionals alike. 

Cord Blood Banking 
Provides you and your family with relevant information on cord blood, banking options and emerging research, so that you can make the best decision possible for your family. This organization promotes awareness for current and future stem cell treatments, and offers comprehensive and up-to-date resource available for mothers and families considering cord blood banking.

Cord23 Biobank

This organization is dedicated to using state of the art cord blood banking technology to help protect your family from life threatening diseases.  Visit their site to learn more about advantages to saving or donating your child’s umbilical cord blood to help people safely recovery from what could be life threatening diseases.

National Newborn Screening and Genetics-Resource Center 
NNSGRC serves as an independent U.S. national resource center for newborn screening and provides newborn screening information globally. In addition to providing independent consultative services, program reviews, selected national data, and hosting a respected international discussion list-serve, the NNSGRC provides information and related resources to benefit national and international newborn screening stakeholders.

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Cancer

American Cancer Society
A nationwide, community-based voluntary health organization dedicated to eliminating cancer as a major health problem. Headquartered in Atlanta, Georgia, their website provides cancer information, programs and services, research, events, and links to more resources.

Bright Pink Explore Your Genetics

Learn more about Breast Cancer and your risk based on genetics.

Centers for Disease Control and Prevention (CDC) Public Health Genomics Knowledge Base

The CDC Public Health Genomics Knowledge Base is an online, continuously updated, searchable database of published scientific literature, CDC resources, and other materials that address the translation of genomic discoveries into improved health care and disease prevention. The CDC launched their new version of PHGKB (1.3) that features two new specialized knowledge bases, one on cancer and one for infectious diseases. 

Colon Cancer Alliance 
The Colon Cancer Alliance’s mission is to knock colon cancer out of the top three cancer killers by championing prevention, funding cutting-edge research and providing the highest quality patient support services.  Provides information about family history and hereditary types of colon cancer on their site.

Live Strong 
Provides resources, support, guidebooks, and gear for patients, survivors, and caregivers. Cancer affects the whole family. 

Marcy Brenner 
Personal Breast Cancer Story/Musician Provides insight into Marcy’s experience with breast cancer through music and film.

National Cancer Institute  
Cancer genetic information summaries for patients and healthcare professionals. Topics include breast and gynecologic cancers; colorectal cancer; endocrine and neuroendocrine neoplasia; genetics of kidney cancer; Prostate cancer; and genetics of skin cancer.  Also has a listing of resources for cancer genetics services.  

National Human Genome Research Institute 
Website for the federally funded program, NHGRI, focused primarily on human genome research.  Site provides information for researchers, educators, and the general public about genome discoveries, events, fact sheets, newsroom, and training.

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Research

American Indian and Alaskan Native Genetics Resource Center 
A resource guide developed by the National Congress of American Indians Policy Research Center.  The goal is to provide tribal leaders and AI/AN peoples with the tools and information they need to make their own informed decisions about genetics research.  This resource provides information about unique considerations in conducting research with tribal communities.

Clinical Trials
A registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. Learn more about clinical studies, including relevant history, policies, and laws.

Precision Medicine Initiative 
Precision medicine (PMI) is an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person. On this site, learn more about the federally funded PMI Cohort Program which seeks to extend precision medicine to all diseases by building a national research cohort of one million or more U.S. participants. See more about this newly launched research program here

Undiagnosed Disease Network

This network funded by the NIH is designed to accelerate discovery and innovation in the way we diagnose and treat patients with previously undiagnosed diseases.  The goals of the network which has seven sites across the US include:  

  • To provide answers to patients with mysterious conditions that have long eluded diagnosis
  • To advance medical knowledge about rare and common diseases

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Get Support & Connect

E-patients 
Website for The Society for Participatory Medicine whose mission is to catalyze collaborative partnerships across the continuum of care to optimize health and health care. Offers a blog, journal, and meetings to network and learn more.

Genetic Alliance 
A network of more than 1200 disease-specific organizations, plus universities, private companies, government agencies, and public policy organizations. Offers shared resources, creative tools, and innovative programs at the intersection of health and genetics. Active in policy and advocacy circles.

Genetic Counselor

This directory has been developed to assist physicians, patients and genetic counselors in accessing genetic counseling services.

Genetics and Rare Diseases Information Center
Provides access to information specialists who answer questions about rare and genetic diseases, how to find genetics specialists and clinics, as well as details about disease conditions.  Content available in English and Spanish.

Patients Like Me
Site designed to connect people with similar health concerns; to learn from others; to track your health, and contribute to research.  Focuses on making patients active contributors to healthcare.

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