Links to Resources
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General Genetics Resources and Organizations
This is an excellent resource for all who wish to advocate on behalf of individuals with genetic conditions, and for those who wish to be self-advocates. From Genetic Alliance.
Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.
Genetics Home Reference is the National Library of Medicine’s web site for consumer information about genetic conditions and the genes or chromosomes related to those conditions.
Genetic and Rare Diseases Information Center (GARD)
GARD provides the public with access to current, reliable, and easy to understand information about genetic and rare diseases in English and Spanish.
Genetic and Rare Conditions Site
This site, from Medical Genetics at the University of Kansas Medical Center, contains links to a wealth of resources, including support and advocacy groups and disease-specific information.
Genes and Disease is a collection of articles that discuss genes and the diseases that they cause.
Genes in Life is a place to learn about all the ways genetics is a part of your life.
The Midwest Genetics Collaborative (MGN) unites patients, families, geneticists, genetic counselors, primary care providers, and public health experts from each of our seven states (Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, Wisconsin) to link medically underserved populations to genetic services.
Preconception and Prenatal Genetics
Cystic Fibrosis: Prenatal Screening and Diagnosis
Information from the American College of Obstetricians and Gynecologists.
Genetics and Carrier Screening: Jewish Genetic Disease Consortium
Information on carrier screening related for Jewish genetic diseases
Information about possible reasons to have preconception/prenatal genetic counseling.
This information related to preconception/prenatal genetics comes from the Fetal Concerns Center at Children’s Hospital of Wisconsin.
Questions Expectant Mothers Should Ask Before Prenatal Screening
Information from the National Society of Genetic Counselors
Pediatric (Children) Genetics Resources
Birth to Five: Watch Me Thrive!
Birth to 5: Watch Me Thrive! is a coordinated federal effort to encourage healthy child development, universal developmental and behavioral screening for children, and support for the families and providers who care for them. This website provides useful information for families with young children, including those affected by genetic conditions.
Children with Down Syndrome: Health Care Information for Families
From healthychildren.org, this information helps families to understand the medical and other issues involved with caring for a child with Down Syndrome.
Genetics Education Materials For School Success is a site geared towards educating teachers and school personnel about genetic conditions. It may be useful for families trying to collaborate with schools.
Jewish Genetics Resources
The Center for Jewish Genetics is an educational resource for hereditary cancers and Jewish genetic disorders. The Center strives to inform community members and raise awareness of available options, including its own subsidized genetic counseling and screening program, so they can plan for a healthy future.
This site provides a free, ongoing, genetics educational series for the Jewish Community. From the Program for Jewish Genetic Health.
Jewish Genetic Disease Consortium
The Jewish Genetic Disease Consortium (JGDC) increases awareness about Jewish Genetic Diseases (JGDs) and encourages timely and appropriate screening for all persons of Jewish heritage. Information is available on the site regarding the group of diseases considered Jewish genetic diseases.