From information and support to international dementia organizations and genetic testing, we’re covering the MAP-T for patients and their families.
MAPT FTD is an inherited condition, which means the disease can be passed down in families. Genetic testing can provide clarity about whether you or your family members carry a MAPT mutation. This knowledge can help with planning for the future, understanding symptoms, and accessing research or future clinical trials.
Learning your genetic status is a deeply personal choice, and the decision should only be made when you feel emotionally prepared and supported. The process can have significant emotional, practical, and family implications, so we strongly encourage connecting with a genetic counselor or a specialist to discuss your goals, fears, and what the results might mean for you and your loved ones.
Research participation:
ALLFTD (USA)
ALLFTD is the largest multi-center research study in North America focused on FTD. The study brings together participants with both familial and sporadic (non-genetic) forms of FTD, along with “at-risk” family members, even those without symptoms.
By participating in the ALLFTD research study, eligible individuals and families can receive free genetic testing, counseling, and follow-up evaluations. Participation is voluntary, and you’ll be guided by a study team that discusses the process and implications of testing.
Sponsored genetic testing programs:
Probably Genetic (USA)
Probably Genetic is on a mission to make genetic testing affordable and accessible to people with rare diseses.
Their free testing program is open to all people in the US with symptoms suggestive of FTD. Eligible participants may be given a free genetic test on a case by case basis after review by experts.
Through your insurance:
Most commercial insurance plans and Medicare cover genetic testing if it meets medical necessity criteria. Contact your insurance provider to ask if this specific test is covered. Many insurers require pre-approval for genetic tests - even if they're medically necessary.
Through self-pay:
InformedDNA
InformedDNA has provided genetic counseling services to more than 200,000 patients. Their process involves starting with genetic counseling by board-certified genetics experts, taking a test, and following up with the same counselor. Out of pocket costs can range from $400-$1000 or more. Your genetic counselor will review pricing and discuss financial assistance before you proceed with testing.
Helpful tips:
If you need immediate help or support, please call AFTD's HelpLine:
1-866-507-7222
This is a rare disease, but you don't have to feel alone. Joining a support group can connect you with people who are experiencing the same things you are going through. This can offer a safe space to meet people who truly understand.
Meeting people in person can be a great way to meet others like you.
Participating in online groups can be a great way to engage with the MAPT FTD community! We welcome all MAPT FTD families, effected persons, asymptomatic and untested carriers in our group.
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