Your voice matters! PWSA | USA, IPWSO, and FPWR recently brought the PWS patient voice together for a historic FDA Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD). The EL-PFDD meeting will took place during PWSA | USA's 37th National Convention on Thursday, June 22, 2023. A recording of the meeting will be available on PWSA | USA's website soon. In addition to what was shared during the meeting, we are collecting testimonials from our PWS community here. 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. Thank you!
  • Please note: Your entire quote may not be used
  • (This photo will be displayed with your quote in PWSA | USA's Voice of the Patient Report. You can also upload a Word document or PDF with a longer quote if you choose.)