Project encourages lupus patients to share life experiences

The national lupus patient advocacy community is encouraging people with lupus to participate in a project that lets lupus patients contribute to lupus drug development by sharing how the disease affects their daily lives.

Participants can share their experiences, concerns and views on new treatments by taking an online survey. That information will be shared with the Food and Drug Administration and pharmaceutical companies.

On Sept. 25, there will be a Lupus Patient-Focused Drug Development Meeting in Hyattsville, Md., that participants can attend in person or join via webcast. The meeting will be another opportunity for people with lupus to provide input on patient panels and during an open-comment period. The meeting is being organized by the Lupus and Allied Diseases Association, the Lupus Foundation of America, and the Lupus Research Alliance.

“Far too long have individuals with lupus have suffered greatly from the lack of adequate treatments, but through PFDD project they now have the extraordinary opportunity to sit at the table, share their unique viewpoints, and be heard by the FDA, “said Kathleen Arntsen, Lupus and Allied Diseases Association president/CEO. “We are thrilled to be a part of this remarkable and long-overdue initiative, and we strongly urge anyone living with this debilitating disease to act now by taking the survey to help advance new therapies in lupus.”

Jamesetta Smith, president of the Lupus Foundation of Arkansas, is encouraging lupus patients in Arkansas to participate.

“Let us show how many lupus patients are actually here in Arkansas wanting something done about this cruel, complex, devastating, debilitating disease lupus,” Smith said.

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