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.

Read Full Privacy Statement

What is the FTD Disorders Registry?

 Learn more about the registry and FTD Spectrum

The Registry is an online database to collect information from those affected by all types of Frontotemporal Degeneration: behavioral variant FTD (bvFTD), any one of the primary progressive aphasias (PPA), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), or FTD with motor neuron disease (also called FTD-ALS). Persons diagnosed, (current/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: tell us your story.

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



Question of the month

We need an official title for the newly launched Registry newsletter. Is there a word, or phrase that you think would make a perfect name for this publication?  Please take our newsletter naming survey to submit your ideas here.  The winning idea will be featured as the title of the next newsletter!

Not currently signed up to receive the e-newsletter? Consider joining the FTD Disorders...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