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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?
1563
persons joined the registry

 

270
persons diagnosed with FTD
606
family members

 

687
caregivers

CurePSP and Mayo Clinic Family Conference

This conference, June 29th - 30th, 2018 focuses on PSP, CBD, and MND. The agenda features various speakers with in-the-field expertise - neurologists and movement disorder specialists who work directly with patients and their families. These experts will address issues related to day-to-day life including the best ways to manage symptoms, the impact of the diseases on the family, and how to cultivate perspective of meaning and joy despite the struggles of the disease. (click...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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