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
Quick Question November 2024 Result: In what areas do you feel people from families with genetic FTD need the most support?
The FTD Disorders Registry’s November Quick Question received 396 responses about the type of support families with genetic FTD need.
Quick Question October 2024 Result: How much do you feel you (or your loved one’s) participation in the Registry could contribute to advances in FTD research?
552 people answered the FTD Disorders Registry’s October Quick Question about how much they felt participation in the Registry could contribute to advances in FTD research.
Research Highlight: Exploring Families’ Interest in Understanding Genetic FTD
Kim Jenny, Manager of Genetic Initiatives for the Association for Frontotemporal Degeneration (AFTD), presented the results as a poster at the International Society for Frontotemporal Dementias (ISFTD)’s annual conference.
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Virtual Panel: Power in Numbers
Virtual Breakout Panel | Friday, May 3rd | 3:45 PM MT
Power in Numbers: How the FTD Disorders Registry Drives Groundbreaking Research
Quick Question March 2025 Result:
576 people answered the FTD Disorders Registry’s March Quick Question where we asked about what types of FTD-related research content respondents would find most valuable. The information will be used to help develop new content for our Registry dashboard, website, and printed materials.
Virtual Panel: Power in Numbers
Virtual Breakout Panel | Friday, May 3rd | 3:45 PM MT
Power in Numbers: How the FTD Disorders Registry Drives Groundbreaking Research
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:
