On March 5th, 2021, we invited our community to participate in an Externally Led Patient-Focused Drug Development (EL-PFDD) meeting focused on FTD. EL-PFDD meetings were established by the FDA to hear directly from those living with a condition about their experiences, symptoms, treatments, and hopes for new therapies. In preparation for this meeting, AFTD worked with the FTD Disorders Registry to distribute an FTD Insights Survey, in which we asked you to provide information on the lived experience of FTD.

You answered that call. More than 550 people participated in the EL-PFDD meeting, and over 1,750 people completed our FTD Insights Survey.

Watch the Recording of the EL-PFDD Meeting for FTD

Last month, we were pleased to announce the release of Degeneración frontotemporal: informe de la voz del paciente, which summarizes the EL-PFDD meeting and includes key takeaways from the FTD Insights Survey. This report will serve as a powerful tool for the U.S. Food and Drug Administration to use in making decisions about future treatments for FTD, and an important set of guideposts for researchers and companies working to develop treatments.

Thank you for your participation in this landmark event, and for your partnership in AFTD’s work to end FTD. AFTD is grateful to all who made this work possible, including our generous EL-PFDD Meeting sponsors. Click below for more information, and to access the full report and meeting recording.

Download the Voice of the Patient Report