Genetic Testing for Frontotemporal Dementia (FTD)

Important: We generally recommend a formal evaluation through a neurologist if FTD is suspected. However, if you are interested in exploring genetic testing, here are some options:

1. If you have a confirmed FTD diagnosis

• Free genetic testing may be available through sponsored programs:
  • Passage Bio / InformedDNA: https://informeddna.com/passagebio-ftd/
  • AFTD: https://www.theaftd.org/ftd-genetics/genetics-no-cost/

2. If you are interested in testing or want to learn more about family risk

• Speak with a genetic counselor through the Frontotemporal Degeneration Genetic Counseling Directory:
  https://www.theaftd.org/wp-content/uploads/2025/04/Genetic-Counselors-Directory-4.2025.pdf
• Cost: ~ $150 (usually not covered by Medicare)
• Family history can be helpful, but most FTD cases (~70%) are not inherited
• Genetic testing is increasingly recommended for anyone diagnosed with FTD
• Common genes tested include MAPT, GRN, and C9orf72

3. Research opportunities

• Consider studies like the ALLFTD Study: https://www.allftd.org/sites
• May offer no-cost testing
• Participation depends on location and eligibility

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Other Links

InformedDNA - https://informeddna.com/passagebio-ftd/
AFTD -https://www.theaftd.org/ftd-genetics/genetics-no-cost/
Frontotemporal Degeneration Genetic counseling Directory - https://www.theaftd.org/wp-content/uploads/2025/04/Genetic-Counselors-Directory-4.2025.pdf
ALLFTD Study - https://www.allftd.org/sites