FTD Resources

FTD Resources

You do not have to face frontotemporal degeneration (FTD) alone. We have created a list of resources to help you find the information and support you need throughout your FTD journey.  Select a topic by clicking the buttons below or using the side menu.

  • Learn more about FTD, a group of rare conditions that affect the brain.
  • Find an FTD specialist who can care for you and your family.
  • Find tools to help you and your family cope with FTD.
  • Learn how to take care of yourself, connect with other caregivers, and find tools for success.
  • Learn about organizations with resources that support people living with FTD.
  • Learn about research, questions to ask, and the rules that protect you.
  • Learn about the role genes play in frontotemporal degeneration.
  • Find details on the process, costs, and other facts about making a brain donation.
  • Read online or print a list of common questions about the FTD Disorders Registry.
  • See glossary with words related to the science of FTD.

** Any resources that the FTD Disorders Registry (FTDDR) provides are for informational purposes only. FTDDR is not responsible for and does not endorse the materials at the linked sites. Advice regarding your personal medical management should be obtained through consultation with a healthcare provider who is familiar with your medical history.

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.

Read Full Privacy Statement



This 15-month remote study will help researchers determine whether caregivers of persons with dementia, including FTD, would find a technology-based matching program valuable for locating another caregiver for peer-to-peer support. Additionally to determine if algorithmic matches are more beneficial than random ones. Must be at least 18 years old, have access to the internet, and be a current or former caregiver who has been in the role of providing care for someone with dementia for at least 3 months.

For more information, visit the study listing on ClinicalTrials.gov.

Other Ways to Help

Spread the Word

Ask your family and friends to join in fighting FTD/Spectrum

Learn about FTD research

Why learn about FTD