Externally-Led Patient Focused Drug Development Meeting & Report

Voice of the Patient & Caregiver Report: A Patient-Focused Drug Development Meeting for SYNGAP1-related Disorders

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What is this?

The SYNGAP1 Foundation, formerly Bridge the Gap – SYNGAP Education and Research Foundation, is a patient advocacy organization representing those who care for, suffer from, SYNGAP1–related disorders. This Voice of the Patient and Caregiver report was prepared by The SYNGAP1 Foundation as a summary of the input shared by patients living with SYNGAP1–related disorders during an Externally-Led Patient Focused Drug Development Meeting (EL-PFDD). This meeting was hosted virtually on November 19, 2020.

The meeting itself and the information provided through the open public docket were used to write up our final report to share with the community, and to be given to researchers initiating drug trials in SYNGAP1-related Disorders. The Food & Drug Administration is also hosting a link back to this page on their External Resources and Information Related to Patient Experience webpage.

Why hold a patient-focused drug development meeting?

The SYNGAP1 Foundation believes all research should be patient centric. There should be no treatments developed for SYNGAP1 without the community having a say, so we — SYNGAP1 Foundation — secured an externally led patient-focused drug development (also known as PFDD) meeting for SYNGAP1-related Disorders, which was live-streamed online November 19, 2020.