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

Starting with yours.

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.

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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?

Updates

4001
persons joined the Registry

 

769
persons diagnosed with FTD
1629
family members

 

1603
caregivers

 

AFTD/FTDDR Webinar: Gene Therapy in FTD - December 3, 2020

Gene therapy is showing promise for treating a wide range of diseases, and related clinical trials are emerging for FTD. To share information on familial FTD, gene therapy, and the role of persons with FTD gene mutations, the Association for Frontotemporal Degeneration and the FTD Disorders Registry are hosting an educational webinar on Thursday, December 3, 2020, beginning at 3:00 p.m. EST (12:00 p.m. PST).

Experts presenting will be Erik Roberson, M.D., Ph.D., a neurologist at the...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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