In the world of FTD, every story advances the science. 

Starting with yours.



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.

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What is the FTD Disorders Registry?

Learn more about the 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:

Join the Registry. Tell your story. Advance the science.

And Now We Work Together > Will you join the community working to end FTD?
persons joined the Registry


persons diagnosed with FTD
family members



EL-PFDD Meeting: March 5, 2021

Take the survey, watch the live stream, have your FTD voice heard!

People living with a rare disease are uniquely positioned to provide information to increase understanding for the development and evaluations of treatments. On March 5, 2021, persons affected by FTD will have such an opportunity during an Externally-Led Patient-Focused Drug Discovery (EL-PFDD) meeting with representatives of the U.S. Food and...more >

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.

 Participate in Research

Spread the Word

Invite family and friends to join the growing FTD Registry.

 Be an advocate

 Raise awareness

The FTD Registry is a partnership of:

 Partner with us

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