GENETICS AND RESEARCH

Children and Clinical Studies
Created by the New England Research Institute (NERI) this site is for parents and children to learn about clinical studies.

Genes in Life
Site answers questions about health and genetics covering how genetics work, the impact of genetics on families, genetic diseases, genetic testing and how to get involved with research.

The Genetic Alliance
An international coalition of individuals, professionals and advocacy/support organizations impacted by genetics. Provides information and updates on discrimination, testing, newborn screening and public policy related to genetics as well as information on the Genetic Information Nondiscrimination Act of 2008 (GINA).

Genetic Cardiomyopathy Awareness Consortium
The Genetic Cardiomyopathy Awareness Campaign was launched in the U.S. in early 2023 by eight U.S.-based cardiomyopathy patient groups to raise awareness about the need for genetic testing for cardiomyopathy patients and family members.

The purpose of this campaign is to raise awareness and to get more cardiomyopathy patients and family members genetically tested, which will help save lives and advance genetic research and therapies.

Genetics Education Materials for School Success (GEMS)
Features information that schools can use to support students with genetic conditions. Includes a library of tools and tips covering educational support, dietary needs, field trips and sports.

Genetics Home Reference: Guide to Understanding Genetic Conditions
Consumer-friendly information about the effects of genetic variations on human health provided by the National Institutes of Health.

GINA & You
Developed by the Genetic Alliance, the Genetics and Public Policy Center at Johns Hopkins University, and the National Coalition for Health Professional Education in Genetics, this fact sheet provides information to understand the Genetic Information Nondiscrimination Act of 2008.

Learning Genetics
Developed by Columbia University Medical Center, these consumer-friendly educational videos provide an introduction to genetics, genetic testing, exome sequencing, and understanding test results.

National Human Genome Research Institute
Education pages provide genetic education resources, science fact sheets and glossary of terms to understand the basics of genetic research.

NIH Clinical Research Trials
National Institutes of Health page that offers information and resources for families considering enrolling their children in clinical research.

Pediatric Heart Network
A cooperative effort between participating medical centers, a data coordinating center and the National Heart, Lung, and Blood Institute to conduct research studies on children with congenital or acquired heart disease.

Rare Genomics Institute
An organization focused on rare disease advocacy and research, offering networking, patient information, and resources to raise funds.

Virtual Genetics Education Center
University of Leicester sponsored site that provides genetic information and resources for both the layperson and health professional.