policy & Publications

Patient Resources

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Newly Updated! Genetic Testing for Cystic Fibrosis: A Handbook for Families
Newly Updated! Genetic Testing for Cystic Fibrosis: A Handbook for Families

This newly updated booklet offers a brief review of the genetics of Cystic Fibrosis, including information for patients and families regarding testing, prenatal diagnosis and genetic counseling for cystic fibrosis. ©2013. 

FAP and Me: A Kid’s Guide to Familial Adenomatous Polyposis
FAP and Me:  A Kid’s Guide to Familial Adenomatous Polyposis
This child-friendly guide reinforces the information about Familial Adenomatous Polyposis (FAP) that families, doctors, and genetic counselors provide for children at risk. Booklet includes basic information, presented in a fun way that is easy to read and understand. Also included are issues of privacy, resources for parents, a glossary of terms and great illustrations! ©2004

Cardio What?
Cardio What?
This child-friendly guide helps children understand their own and/or their family member's diagnosis of cardiomyopathy. It addresses information about inherited forms of cardiomyopathy that cardiologists, genetic counselors or other health professionals may have discussed. Booklet contains basic information, great illustrations, and a list of resources. ©2005

¿Cardio Què?

The Spanish version of the child-friendly guide, "Cardio What?" helps children understand their own and/or their family member's diagnosis of cardiomyopathy. It addresses information about inherited forms of cardiomyopathy that cardiologists, genetic counselors or other health professionals may have discussed. Booklet contains basic information, great illustrations, and a list of resources. ©2005

To purchase, please contact the NSGC Executive office at nsgc@nsgc.org or download the pdf.

Prenatal Screening and Testing from Chromosome Conditions

This online prenatal testing information tool  published by Lettercase provides the contents found in Lettercase's “Prenatal Screening and Testing for Chromosome Conditions” pamphlet, as well as links to additional resources and more detailed information about chromosome conditions. “Prenatal Screening and Testing for Chromosome Conditions” is also available as a printed pamphlet in the Lettercase Bookstore.

This pamphlet was prepared with assistance from representatives of The National Society of Genetic Counselors with funding provided by the U.S. Administration on Intellectual and Developmental Disabilities (AIDD), though no official endorsement from AIDD should be inferred.

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