Help & Hope: The new FTD Disorders Registry Platform is Now Live!

Graphic: The new FTD Disorders Registry Platform is Now Live

The FTD Disorders Registry announced the launch of their updated platform at the AFTD 2024 Education Conference in Houston, TX.

By joining the FTD Disorders Registry, you are counted as a key participant in the quest to end FTD disorders. By providing vital information about your lived experience of FTD disorders, you play a role in driving research, potentially unlocking breakthroughs that can lead to improved treatments and better health outcomes.

The updated platform offers a more personalized experience, allowing participants to easily find research opportunities and content that aligns with their interests. The platform also provides participants will more options to share insights through additional surveys, electronic medical records, genetic reports, and autopsy reports.

Anyone with a connection to FTD disorders can create an account with the FTD Disorders Registry. Numbers have power, and the Registry relies on those diagnosed with FTD disorders, their caregivers, family members, friends, researchers, and healthcare providers to create a powerful network to advance the science for ending FTD disorders.

When you join the Registry, you will receive notifications when a research study seeking participants matches your interests, as well as insights on FTD resources and research news.

Once someone has created an account in the Registry, eligible participants also have the option of registering to participate in the FTD Disorders Registry research study. As a participant in research, participants will sign an informed consent form and complete surveys to provide their unique perspective. When you register for research, your insights combine with others with lived experience with FTD disorders to accelerate research and improvements in care.

We invite everyone impacted by FTD disorders to join the Registry and contribute to this vital resource. Your participation helps to build a comprehensive understanding of FTD disorders, which can lead to earlier diagnoses, better treatments, and ultimately, a cure.

Visit to join. If you have questions, please contact the Registry Manager at or 1-888-840-9980.

Stay Informed


Sign up now and stay on top of the latest with our newsletter, event alerts, and more…