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PacNoRGG Publications
Fact sheets and other resources for individuals and families developed by the Pacific Northwest Regional Genetics Group (PacNoRGG) about genetic testing, genetic screening, and some specific genetic conditions.
Genetic Alliance
Founded in 1986 as the Alliance for Genetic Support Groups, Genetic Alliance has become the world's leading nonprofit health advocacy organization committed to transforming health through genetics. Our open network connects members of parent and family groups, community organizations, disease-specific advocacy organizations, professional societies, educational institutions, corporations, and government agencies to create novel partnerships. We actively engage in improving access to information for individuals, families and communities, while supporting the translation of research into services.
Newborn Screening Clearinghouse
A website run by the Genetic Alliance and dedicated to collecting information about newborn screening
Genetic Education Materials Database
A searchable database of genetics education materials
1. Handbook—“Help Me Understand Genetics” pdf and html
2. Handbook—“Understanding Genetics—A Guide for Patients and Professionals”
An eleven chapter handbook with a fairly high reading level with information about genes, chromosomes, diagnosis, newborn screening, genetic testing, and more. Download pdf and html.
3. Material—“My Family Portrait”
pdf and html, information and a form to fill out about your family health history, helps families understand their genetic inheritance and risk for disease, can be used to partner with medical professionals, comes in several languages.
4. Web site: “Ask the Geneticist”
A collaborative effort of the Department of Human Genetics at Emory University and the Department of Genetics at the University of Alabama at Birmingham. The mission of AsktheGeneticist (SM) is to answer questions about genetic concepts, and the etiology, treatment, research, testing, and predisposition to genetic disorders. Questions that meet this criteria are answered and posted to the site. Use of this website assumes acceptance of the terms of use. Selected questions and answers are posted within 3 weeks. The confidentiality of all visitors to this site is respected according to the HIPAA Privacy Rule and Georgia and Alabama State law.
Submit Your Question
Genetic Fact Sheets
Links to Genetics Resources
Roadmap to Genetic Services
Genetic Research Studies: Where to Look
Careers in Genetics
5. Web site: Genetic Alliance
Founded in 1986 as the Alliance for Genetic Support Groups, Genetic Alliance has become the world's leading nonprofit health advocacy organization committed to transforming health through genetics. Our open network connects members of parent and family groups, community organizations, disease-specific advocacy organizations, professional societies, educational institutions, corporations, and government agencies to create novel partnerships. We actively engage in improving access to information for individuals, families and communities, while supporting the translation of research into services.
6. Web site:
Genetic and Rare Diseases Information Center (GARD)
A collaborative effort of two agencies of the National Institutes of Health – The Office of Rare Diseases and the National Human Genome Research Institute – to help people find useful information about genetic conditions and rare diseases.
7. Web site: National Organization for Rare Disorders
Information, news research, resources and much more about rare disorders.
For more information about our project, please contact us.