Genetics & Research

Children and Clinical Studies
National Heart, Lung and Blood consumer site offers facts and insights to families considering enrolling their children in clinical research.

ClinicalTrials.gov
A registry of federally and privately supported clinical trials conducted in the United States and around the world.

Dept. of Health and Human Services: My Family Health Portrait
Web-based tool that helps individuals to record family history information in a chart and family tree to aid in a family’s genetic review.

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).

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.

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.

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: Rare Diseases Diagnosis, Therapies and Hope
Offers a downloadable e-book that focuses on various rare diseases and includes family case studies, interviews from experts, information about genetics, resources and tips for parents.

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

Heart Transplants

 

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