NUMBERS HAVE POWER.
JOIN THE REGISTRY.
ADVANCE THE SCIENCE.
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.
WHAT IS THE FTD DISORDERS REGISTRY?
The Registry is an online database that collects information from those affected by all types of frontotemporal degeneration (FTD):
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:
NUMBERS HAVE POWER.
JOIN THE REGISTRY.
ADVANCE THE SCIENCE.
NUMBERS HAVE POWER.
JOIN THE REGISTRY.
ADVANCE THE SCIENCE.
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.
WHAT IS THE FTD DISORDERS REGISTRY?
The Registry is an online database that collects information from those affected by all types of frontotemporal degeneration (FTD):
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:
AND NOW WE WORK TOGETHER >
Will you join the community working to end FTD?
WHO CAN JOIN >
Anyone with a connection to FTD disorders and an interest in research is encouraged to join the Registry, including:
- people diagnosed with an FTD disorder
- biological family members
- spouses
- caregivers
- friends
- physicians
- and other healthcare professionals
UPDATES
From Surveys to Science: How Registry Data Becomes Research
Every survey response in the Registry Research Study helps turn lived experience into research data that drives discovery.
Get Ready for World FTD Awareness Week
World FTD Awareness Week is September 21-27, 2025.
Quick Question August 2025 Result:
528 participants responded to the FTD Disorders Registry’s August Quick Question on health insurance coverage.
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The Road Ahead: How Registry Data Can Drive Breakthroughs
Progress is possible. See how Registry data can unlock breakthroughs in FTD research just as new treatments are showing progress in other neurological disorders.
What Registry Data Tells Us About Genetic Testing
Only a fraction of people with FTD and their relatives pursue genetic testing. This World FTD Awareness Week, discover how genetic counseling can guide the way.
The Road Ahead: How Registry Data Can Drive Breakthroughs
Progress is possible. See how Registry data can unlock breakthroughs in FTD research just as new treatments are showing progress in other neurological disorders.
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.
SPREAD THE WORD
Invite family and friends to join the growing FTD Registry.
THE FTD REGISTRY IS A PARTNERSHIP OF:
