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FDA Externally-Led Patient-Focused Drug Development Meeting

June 22, 2023 @ 12:00 pm - 4:30 pm

Your Voice Will Make a Difference!

Prader-Willi Syndrome’s First Externally Led Patient-Focused Drug Development Meeting will take place June 22, 2023 from 12:00 – 4:30pm EST both Virtually Via Zoom and In-Person at the Hilton Orlando Buena Vista Palace.


The Prader-Willi Syndrome community is invited to attend our first Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting at PWSA USA’s National Convention this summer.

This meeting provides an opportunity for patients, caregivers, and advocates to share their perspectives and experiences with the FDA and drug developers. By attending this meeting, you can make your voice heard and help shape the development of new treatments and therapies for Prader-Willi syndrome. Together, we can work towards improving the lives of those affected by this rare and complex genetic disorder.

Don’t miss this chance to be part of the conversation and make a difference in the future of PWS treatment options. You can choose to attend the FREE in-person EL-PFDD when you register for PWSA | USA’s 37th National Convention OR you can attend virtually by clicking here.

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. Share your testimonial by clicking here.


June 22, 2023
12:00 pm - 4:30 pm


Hilton Orlando Buena Vista Palace
1900 East Buena Vista Drive
Lake Buena Vista, Florida 32830 United States
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