The PWS Voice of the Patient Report has Been Filed with the FDA!

On May 1, 2024, the first day of PWS Awareness Month, the Voice of the Patient Report was officially filed with the FDA! This timely filing marks a significant moment for the Prader-Willi syndrome community. The report gives crucial insights that amplify the perspective of individuals and families affected by PWS and sheds light on aspects of PWS that may not be fully captured in drug trials alone. Integrating the patient’s voice throughout the drug approval process for PWS treatments is essential for the U.S. Food and Drug Administration’s (FDA) comprehensive understanding and impactful decision-making. 

The Voice of the Patient Report was created following the June 2023 PWS Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting and is compiled of testimonials shared during the EL-PFDD meeting, as well as those submitted virtually.

PWSA | USA, FPWR, and IPWSO extend heartfelt gratitude to the entire PWS community for contributing to the success of this project. You can read the Voice of the Patient Report by clicking the button below.

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