Resources and References

Finding a Genetic Counselor and Genetic Testing

There are many ways to access genetic counseling and testing. At this time, all genetic testing must be ordered through a healthcare provider, although sponsored testing programs may be able to connect you to a provider. Physicians vary in knowledge on genetic testing and their comfort in ordering such tests. People considering genetic testing for FTD should speak with a genetic counselor about their personal risk and to understand the testing process and possible results.

Genetic counselors are located in hospitals throughout the country and available by telemedicine. The “Find a Genetic Counselor” service, available through the National Society of Genetic Counselors, will allow you to search for genetic counselors by zip code, by specialty, and by whether they offer services by telehealth.

Genetic counseling providers associated with sponsored testing programs include:

Additional Resources

Several AFTD webinars on genetics in FTD are available:

AFTD has worked with the University of Pennsylvania Center for Neurodegenerative Disease Research to publish a booklet called Understanding the Genetics of FTD: A Guide for Patients and Their Families. You can download the booklet here or request a print copy by emailing [email protected].

  • The FTD Disorders Registry is a non-profit co-founded by AFTD to connect individuals to clinical research opportunities, provide resources on research participation, and gather information from individuals to inform clinical research. The Registry offers educational resources related to genetic testing and counseling.

The National Society of Genetic Counselors (NSGC), the professional organization for genetic counselors, is another resource you can contact to locate a certified genetic counselor in your area.

An excellent introduction to the fundamentals of genetics and genetic disorders is learn.genetics.utah.edu, an online resource developed and maintained by the University of Utah’s Genetic Science Learning Center.

For information on the genetics of Alzheimer’s disease, view the website of the National Institute on Aging for a fact sheet.

CureVCP is an organization devoted to curing diseases caused by mutations of the VCP protein, including FTD. Visit the CureVCP website for more information.

References

Content in the FTD Genetics section of AFTD’s website draws from numerous studies since 2009: