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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

2880
persons joined the registry

 

539
persons diagnosed with FTD
1162
family members

 

1179
caregivers

 

Orphan Drug May Reverse Progranulin Deficiency

AL001 was seen to be generally safe and well-tolerated based on the results of the Phase 1 portion of the INFRONT clinical study.

Alector, Inc. recently reported positive data from a subset of patients in its INFRONT clinical study the orphan drug AL001. AL001 is being evaluated to treat patients with frontotemporal dementia with a granulin mutation (FTD-GRN). 
 
The study data was presented in July at the 2019 Alzheimer's Association International...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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