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The Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting for
Phelan-McDermid syndrome (PMS) was held on November 8, 2022 (recording below).
 

This project is now in its second phase. Our science writer is composing the Voice of the Patient report, which compiles and summarizes the content of the EL-PFDD meeting, as well as the hundreds of written comments submitted by PMS families sharing their lived experiences. This report will will be utilized by the FDA, industry, researchers, and other stakeholders as important context in development of treatments to meet the most urgent needs of the PMS community.
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Recording: EL-PFDD Meeting for PMS

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