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

Being Counted is an Act of Hope

Being counted is an act of hope, a way for individuals and families impacted by frontotemporal degeneration to turn their lived experience into momentum for research, visibility, and a future with better diagnosis, care, and treatments.

more > about Being Counted is an Act of Hope

Why We Ask the Questions We Ask

Ever wonder why the Registry asks about finances or work life? Here’s how those questions help move FTD research forward.

more > about Why We Ask the Questions We Ask

Quick Question January 2026 Result:

The highest response was access to specialists with FTD experience with 20.4%. There was also strong support for emotional or mental health support for patient and/or caregiver at 15.2% and …

more > about Quick Question January 2026 Result:

Being Counted is an Act of Hope

Being counted is an act of hope, a way for individuals and families impacted by frontotemporal degeneration to turn their lived experience into momentum for research, visibility, and a future with better diagnosis, care, and treatments.

more > about Being Counted is an Act of Hope

Why We Ask the Questions We Ask

Ever wonder why the Registry asks about finances or work life? Here’s how those questions help move FTD research forward.

more > about Why We Ask the Questions We Ask

Being Counted is an Act of Hope

Being counted is an act of hope, a way for individuals and families impacted by frontotemporal degeneration to turn their lived experience into momentum for research, visibility, and a future with better diagnosis, care, and treatments.

more > about Being Counted is an Act of Hope

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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