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Family representatives in the Western States Genetic Services Collaborative are currently reviewing the following information and resources using the “Quality Presentation Toolbox” developed by the Genetic Alliance. If you have questions or comments about the resources, please contact Jacquie Stock, MPH, Research Associate at the Center for Children with Special Needs, Seattle Children’s Hospital.
1. Handbook—“Help Me Understand Genetics” pdf and html
2. Handbook—“Understanding Genetics—A Guide for Patients and Professionals”
Download pdf and html with information about genes, chromosomes, diagnosis, newborn screening, genetic testing and more.
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. Flyer—“Could
it be Genetic?”
What to expect from a genetic consultation or evaluation.
5. Flyer—“Genetic
Testing: A Fact Sheet”
Basic information on genetic testing.
6. Flyer—“There’s
No Reason to Face it Alone”
Questions families may want to ask a health care provider or genetic specialist.
7. Web site: “Genetics Home Reference—Your Guide to Understanding Genetics”
Numerous pages covering genes, chromosomes, newborn screening, conditions, resources, and the handbook below.
8. 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
9. Web site: Genetic Alliance
Genetic Alliance is a coalition of more than 600 advocacy organizations serving 25 million people affected by 1000 conditions. The organization works to transform leadership in the genetics community to build capacity in advocacy organizations and to educate policymakers by leveraging the voices of individuals and families. Genetic Alliance increases the capacity of genetic advocacy organizations to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions.
10. 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.
11. Web site: National Organization for Rare Disorders
Information, news research, resources and much more about rare disorders.