Once you have chosen to pursue genetic testing, it can be frustrating to learn that the cost is too high, or insurance will not cover genetic testing. Sponsored testing programs (STPs) provide the opportunity to access genetic testing at no-cost, removing financial barriers and enabling greater access to genetic counseling and testing.

STPs are collaborations between genetic testing labs and either biopharmaceutical companies or advocacy groups. The partners pay for testing, allowing individuals access to no-cost genetic testing. The goal is to reduce the time it takes to receive an accurate diagnosis, raise awareness about FTD, and connect individuals with research opportunities exploring potential treatments.

STPs are similar to standard genetic testing. Genetic counseling is always recommended and is often included at no cost. Just as genetic tests vary from lab to lab, STPs also vary. Our HelpLine team or a genetic counselor can help you determine the most suitable option for you.

No identifiable personal data is shared with the partners unless you provide specific, individual written consent. The sponsor may contact the ordering healthcare provider to discuss potential research or treatment opportunities for a person with positive results.

Partners benefit from increasing the number of patients accurately diagnosed, understanding the prevalence of the condition, and identifying individuals who may be candidates for an established treatment or a clinical trial. It is often difficult for researchers to recruit enough people with a condition to carry out robust trials. By funding genetic testing, the biopharma companies and other organizations can identify potential trial candidates.

STPs are specific to the partnership. Protocols vary, and STPs often evolve. AFTD offers information on what no-cost options are available to you and some currently available STPs on the FTD genetics section of our website. The genetic testing landscape is dynamic. New STPs become available, and some partnerships end or change in scope. A genetic counselor can help you navigate the options available and help you choose the best path forward for you.

To learn more about the genetics of FTD please our What Causes FTD page or contact the AFTD HelpLine at 1-866-507-7222 or info@theaftd.org.