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.

Read Full Privacy Statement

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):

  • behavioral variant FTD (bvFTD)
  • primary progressive aphasias (PPA)
  • progressive supranuclear palsy (PSP)
  • corticobasal degeneration (CBD)
  • FTD with motor neuron disease (also called FTD-ALS)

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:

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.

Read Full Privacy Statement

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):

  • behavioral variant FTD (bvFTD)
  • primary progressive aphasias (PPA)
  • progressive supranuclear palsy (PSP)
  • corticobasal degeneration (CBD)
  • FTD with motor neuron disease (also called FTD-ALS)

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

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…

more > about New Study Explores How FTD-Linked Genes May Shape Brain

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.

more > about The Role of Longitudinal Data in Understanding FTD Progression

Quick Question June 2025 Result:

673 participants responded to the FTD 503 participants responded to the FTD Disorders Registry’s June Quick Question on how satisfied they are with the overall quality of medical care received for FTD. The results varied greatly.

more > about Quick Question June 2025 Result:

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…

more > about New Study Explores How FTD-Linked Genes May Shape Brain

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.

more > about The Role of Longitudinal Data in Understanding FTD Progression

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…

more > about New Study Explores How FTD-Linked Genes May Shape Brain

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:

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