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Lupus Patient-Focused Drug Development Meeting

Sharing the lupus patient perspective with the Food and Drug Administration

On September 25, 2017, the Lupus Foundation of America partnered with the Lupus and Allied Diseases Association and the Lupus Research Alliance to host an externally-led patient focused drug development (PFDD) meeting. At this meeting, members of the lupus community shared their perspectives on living with the disease with the Food and Drug Administration (FDA).

Externally-led (meaning the meeting was not planned by the FDA) PFDD meetings allow patient organizations to generate public input on a disease or condition and share it directly with the FDA to inform the agency’s drug approval and regulatory process. 

Prior to the meeting, the organizations used a survey to solicit input from people with lupus about how the disease affects their lives. More than 2,000 people responded to the survey and provided their perspective on the burdens of living with the disease, issues with currently available treatments, attitudes towards participating in clinical trials, and more. 

At the meeting, more than 300 people affected by lupus, including those with the disease and their caregivers, shared their views about lupus with other participants, leading lupus researchers, and representatives from the FDA. 

"I used to be a competitive cheerleader and dancer that dreamed of moving on to the college level. But the symptoms I experience with lupus have prevented that from ever happening." - Anonymous meeting attendee

This meeting and the Lupus: Patient Voices report generated by the survey and in-person responses will better inform the FDA and pharmaceutical companies about the perspectives of people affected by lupus. We believe this will lead to safer, more effective medications for lupus in the near future.

Learn more about the FDA’s patient-focused drug development initiative and our involvement.

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Watch the Lupus Patient-Focused Drug Development Meeting

To allow for broader participation from the lupus community, the meeting was livestreamed. Recordings of every session are available to view.

Watch the Meeting