Giving Tuesday is Almost here!

We are thrilled to share an exciting milestone: Lipodystrophy United has been awarded the opportunity to host an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting with the U.S. Food and Drug Administration (FDA).

Patient-Focused Drug Development (PFDD) is a process created by FDA to ensure that the voices, experiences, and priorities of patients and caregivers are meaningfully incorporated into drug development and regulatory decision-making. An EL-PFDD meeting is organized by the patient community—in this case, by Lipodystrophy United—with FDA staff attending in a listening capacity.

At this meeting, patients and caregivers will have the chance to speak directly about the daily impact of lipodystrophy, the symptoms that matter most, and what an ideal treatment would look like. The majority of the meeting will follow a town-hall style discussion led by patients, so that the broadest range of lived experiences are captured.