Prader-Willi Syndrome Association

Advocacy and awareness: increasing awareness and effectively advocating for prader-willi syndrome at the state and federal level is a critical component of our mission. We seek to involve all members of our community and work to keep you informed on the best ways to affect change for our loved ones. In 2024, pwsa conducted a dc fly-in drawing 147 advocates representing 31 states. Advocates attended a remarkable 131 congressional meetings to engage in discussion and be a voice for those affected by prader-willi syndrome.

Research: pwsa/usa seeks to support research projects with the potential for immediate and high impact for the pws community. The goal is to fast-track better treatment for the syndrome, and we proudly collaborate with partners representing pharmaceutical companies, research universities, and more to achieve that goal. Pwsa usas clinical and scientific advisory board (csab) dedicate thousands of hours to enhance research, write educational materials and provide consultation to understanding and treating pws. In 2024, multiple phase 3 trials began to bring new hope to the community. Several years of advocacy and research efforts helped pave way to the first fda approved treatment for hyperphagia.