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



Sponsored Genetic Testing Programs for FTD

What are they? How do they differ? Which one is right for you?

A recent increase in the number of new clinical trials that target specific types of frontotemporal degeneration (FTD) caused by gene variants, or mutations, has prompted potential participants to learn their genetic status. To identify patients for these trials, drug companies have begun sponsoring genetic testing programs.

These programs...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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