Genetic Resources

If you have questions about the hereditary risk of Alzheimer’s disease or other neurodegenerative diseases, here is a good place to start.

Coalition for Genetic Fairness 

The Coalition for Genetic Fairness was founded in 1997 to address concern surrounding the misuse of genetic information in health insurance and employment decisions. The site provides a guide to the Genetic Information Non-discrimination Act (GINA) and other resources.

Genetic Information Non-discrimination Act (GINA)    

This resource provides an introduction to GINA and its protections in health insurance and employment. It includes answers to common questions and examples to help you learn about the act.

Huntington’s Disease Youth Organization

A lively and informative website designed and supported by an international group of young people affected by Huntington’s disease.

National Society of Genetic Counselors (NSGC) 

NSGC promotes the professional interests of genetic counselors and provides a network for professional communication.  Search features on the site help people to locate certified genetic counselors in their area.

Talking to Kids About Huntington’s Disease. Hennig, B.

Huntington’s disease is an inherited degenerative brain disease that follows an autosomal dominant pattern of inheritance.  The discovery of the gene that causes Huntington’s spurred the development of genetic testing and counseling protocols now used in other inherited disorders.  This book has information that may be helpful to families with inherited FTD.

US Surgeon General’s Family History Initiative

This effort encourages people to learn more about their family health history.  The Surgeon General has created a computerized tool to help make it fun and easy for anyone to create a sophisticated portrait of their family’s health history.


© 2007-2013 The Association for Frontotemporal Degeneration