Thank You PWS Community for your Advocacy Efforts in 2022!

As we wrap up 2022, we want to recognize the amazing advocacy efforts our community helped us carry out over the past year. Your support, involvement, and VOICE led to many accomplishments, including taking our advocacy efforts to new heights (literally) and laid the foundation for more incredible work to continue in 2023.

PWSA | USA has defined itself as prominent and effective organization, which works to meet the unmet needs of our community. From our inspiring and empowering volunteer summit to our overwhelmingly successful first-ever Washington, D.C. fly-in, PWSA | USA has expanded the reach of our organization, actively engaged with the FDA and established a presence for the PWS community on Capitol Hill.  

In 2023, PWSA | USA will once again elevate our advocacy by continuing to foster our relationships with members of congress. We will push to secure the addition of PWS to the Peer Reviewed Medical Research Program (PRMRP) list of topic areas for research funding, continue to work on ensuring PWS is recognized on the state level throughout the country, and expand our training/educational programs to include podcasts and social media events for the PWS community. Finally, by working with the FDA to host the PWS communities first Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting, PWSA | USA will help ensure that PWS patient experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation. Thank you to all of the amazing members of our PWS community who have worked tirelessly to make 2022 a success… Get ready 2023, here we come!  

Stay tuned for registration information to the kickoff of our 2023 Advocacy in Action webinar series, which will take place on January 17, 2023 at 8PM EST.  

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