We believe that genetics and the genome hold the power to impact life in incredible ways. So the more informed you become about these topics generally, the better able you’ll be to harness that power to help improve your health and well-being. Here are some trusted resources and organizations we recommend to you, for help in your journey of education and exploration.
Organizations
The Alliance for the Adoption of Innovations in Medicine (Aimed Alliance) is an organization that seeks to improve health care in the United States through access to evidence-based treatments and technologies. Aimed Alliance achieves this mission by developing sound, patient-centered policy recommendations, collecting information and providing analysis on patient access to novel medications and measuring the value of such treatments through the improvements to length and quality of life. It also collaborates with like-minded patient and professional groups with complementary missions.
JScreen is a non-proft, community-based public health initiative dedicated to preventing Jewish genetic diseases. It offers genetic testing to couples planning families, as well as genetic counseling and other support and services as needed.
A patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment and cure of rare disorders through education, advocacy, research and patient services.
The Rare Genomics Institute (RG) is an international non-profit that provides access to cutting-edge research technologies, physicians and scientists across the globe. By providing an expert network and an online crowdfunding mechanism, RG helps families pursue personalized research projects for diseases not otherwise studied.
Educational Partners
The National Human Genome Research Institute began as the National Center for Human Genome Research (NCHGR), which was established in 1989 to carry out the role of the National Institutes of Health (NIH) in the International Human Genome Project (HGP).
This professional organization has information about genetic counselors and what patients can expect when they work with a genetic counselor. See aboutgeneticcounselors.com for more details.
A resource for patients to explore genetic medical issues and get answers to questions. You can start by browsing a genetic disease list, locating a disease by symptoms or asking a question. The site already contains thousands of questions and answers about living with genetic disorders, all written by genetic counselors and other medical experts.
Produced by the Wellcome Trust Sanger Institute, yourgenome provides an introduction to the main concepts of DNA, genes and genomes.
