In March, people and families affected by FTD will have the opportunity to speak directly to representatives from the U.S. Food and Drug Administration (FDA), providing input based on their personal experience that will help the government evaluate the effectiveness of potential new FTD therapeutics.

Established by the FDA in 2012, Patient-Focused Drug Development (PFDD) meetings allow the FDA to better understand the perspective of people living with specific diseases. Uniquely formatted to engage and encourage the participation of disease communities, these meetings present an extraordinary opportunity to directly engage with the federal agency that regulates every prescription drug that enters the treatment market.

For those impacted by FTD, the March 5 PFDD meeting – which will be led by AFTD – will allow persons diagnosed, care partners, and others affected to share their journeys firsthand, providing insight into symptoms, daily life, and what they would value most in potential future treatments. This information will help the FDA to identify clinically meaningful outcomes for therapeutic interventions, which in turn could lead to new research and potential treatment targets.

The day-long meeting, which will be entirely virtual, will begin with AFTD Medical Advisory Council Chair Elect Bradford C. Dickerson, MD, presenting a clinical overview of FTD. Then, a session will focus on living with FTD, featuring live and pre-recorded comments from persons diagnosed, care partners, and others. There will also be two panel discussions on current and future FTD treatments, one focused on sporadic FTD and one focused on genetic FTD.

The meeting’s agenda will continue to be shaped in the months ahead, guided by a survey AFTD conducted in October, in partnership with the FTD Disorders Registry. More than 1,200 people took part in the anonymous survey, providing crucial data that will help the FDA better understand what is most important to you regarding potential treatments and participating in clinical trials.

A livestream of the meeting will be publicly accessible – stay tuned to the AFTD website in the coming months for more information. We encourage you to contribute your perspective during the meeting, including through live polls, chat, and phone-in.

AFTD is working every day to build a future free of FTD. This meeting is a critical and important step to obtaining our goal, and your involvement is essential. Together, we can have a direct impact on the future course of therapeutic development, helping to bring hope to individuals and families facing this devastating disease.