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Why Join

When you join the registry, you are becoming part of a community committed to advancing the science, finding treatments and working towards a cure for these life-­altering diseases.

FTD is devastating, but there is hope. By participating in the registry, you become a citizen ­scientist working with other scientists to drive new research. Your story holds the promise of healing for you and others. We can work together to translate each person’s journey with FTD into a powerful tool to change the way clinical trials are run, and to help answer key questions about each disorder. Together, we can change the course of this disease.

Your story can help advance the science now, and for generations to come. Join the Registry.

  • The FTDDR is both a Contact Registry and a Research Registry.
  • As a Contact Registry persons affected by FTD, their caregivers, family members, and friends can join and receive emails about FTD including important research updates and study opportunities. Contact Registry enrollment is open to the United States and international community.
  • As a Research Registry, persons diagnosed, their caregivers, family members, and friends can provide their unique perspective to help us learn more about the entire range of experiences that result from a diagnosis of FTD. Research enrollment is currently open to the United States and Canada.
  • If you are diagnosed with FTD, you can advance the science and help others by adding your story. You can join independently or with the help of a care partner to co-manage your registry account. Participate in research today.
  • If you are a biological family member of someone who is/was diagnosed with FTD, sharing your story can help advance the science. Join the Registry today.
  • If you are a spouse, caregiver, or friend of someone who is/was diagnosed with FTD, your voice is critical in helping us understand FTD. Join the Registry today and participate in research.

We encourage persons diagnosed, as well as, their current or former family members, caregivers, and friends to join the Registry. If an FTD diagnosed loved one can no longer speak for themself to provide their perspective, you have the opportunity to give voice to how FTD has affected their life and yours. Visit About the Registry to learn more about the enrollment categories and what you can do to help.

The FTD Disorders Registry is a powerful tool in the movement for a cure. Your participation can help us get there. Join the registry today.