NUMBERS HAVE POWER.
JOIN THE REGISTRY.
ADVANCE THE SCIENCE.
Together we can find a cure for ftd
The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure. Together we can help change the course of the disease and put an end to FTD.
Your privacy is important! We promise to protect it. We will not share your contact information.
WHAT IS THE FTD DISORDERS REGISTRY?
The Registry is an online database that collects information from those affected by all types of frontotemporal degeneration (FTD):
Persons diagnosed, current and former caregivers, family, and friends can join. As a member of the Registry, you can help us advance the science and move faster toward finding treatments and cures. The first step is simple:
NUMBERS HAVE POWER.
JOIN THE REGISTRY.
ADVANCE THE SCIENCE.
NUMBERS HAVE POWER.
JOIN THE REGISTRY.
ADVANCE THE SCIENCE.
Together we can find a cure for ftd
The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure. Together we can help change the course of the disease and put an end to FTD.
Your privacy is important! We promise to protect it. We will not share your contact information.
WHAT IS THE FTD DISORDERS REGISTRY?
The Registry is an online database that collects information from those affected by all types of frontotemporal degeneration (FTD):
Persons diagnosed, current and former caregivers, family, and friends can join. As a member of the Registry, you can help us advance the science and move faster toward finding treatments and cures. The first step is simple:
AND NOW WE WORK TOGETHER >
Will you join the community working to end FTD?
WHO CAN JOIN >
Anyone with a connection to FTD disorders and an interest in research is encouraged to join the Registry, including:
- people diagnosed with an FTD disorder
- biological family members
- spouses
- caregivers
- friends
- physicians
- and other healthcare professionals
UPDATES
Why Your Family’s Story Matters: The Power of Genetic Counseling and Genetic Testing in FTD Disorders
Understanding the genetic component of FTD can help families make informed health decisions and contribute to critical research that is paving the way toward earlier detection and better treatments.
Quick Question May 2025 Result:
673 participants responded to the FTD Disorders Registry’s May Quick Question on their diagnosis journey.
Inside the Penn FTD Center
The FTD Disorders Registry joined FTD community advocates for a behind-the-scenes tour of the Penn FTD Center,
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New Study Explores How FTD-Linked Genes May Shape Brain
Researchers have long understood that frontotemporal degeneration (FTD) is a neurodegenerative disease that begins in adulthood. But new questions are emerging: Could genes that cause hereditary FTD also influence how the brain develops years, if not decades, before symptoms appear? That is what the GENFI-NeuroDev Study, led by Dr. Elizabeth Finger and funded by the…
The Role of Longitudinal Data in Understanding FTD Progression
Learn how collecting longitudinal data helps researchers track FTD progression over time and develop more effective diagnostics and treatments.
New Study Explores How FTD-Linked Genes May Shape Brain
Researchers have long understood that frontotemporal degeneration (FTD) is a neurodegenerative disease that begins in adulthood. But new questions are emerging: Could genes that cause hereditary FTD also influence how the brain develops years, if not decades, before symptoms appear? That is what the GENFI-NeuroDev Study, led by Dr. Elizabeth Finger and funded by the…
WAYS TO HELP
JOIN US TODAY
Be part of the community working to end FTD. Every voice counts.
PARTICIPATE IN RESEARCH
Support the science for an FTD cure. Sign up here.
SPREAD THE WORD
Invite family and friends to join the growing FTD Registry.
THE FTD REGISTRY IS A PARTNERSHIP OF:
