Your voice matters! PWSA | USA, IPWSO, and FPWR are working to bring the PWS patient voice together for a historic FDA Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD). The EL-PFDD meeting will take place during PWSA | USA's 37th National Convention on Thursday, June 22, 2023 from 12:00 - 4:30 p.m. EST. in Orlando, FL. Ahead of the event, we are collecting testimonials from our PWS community. You can share your personal story, the struggles your family and loved one living with the syndrome have faced, or anything else you want others to consider. These testimonials will be included in our Voice of the Patient Report, which becomes published papers. This will allow pharmaceutical companies access to the report so they can develop protocols that best fit our community's needs. Meaning, with this report, WE can help with the development of drugs to help our entire community. Testimonials will be accepted for the Voice of the Patient Report through June 9, 2023. We believe it is important for our PWS community to also attend the meeting, if you can, in an effort to show strength in numbers. You can select that you will be attending the EL-PFDD meeting while registering for PWSA | USA's 2023 National Convention ( We hope to see you there!
  • Please note: Your entire quote may not be used
  • (This photo would be displayed with your quote in PWSA | USA's Voice of the Patient Report)