Prader-Willi Syndrome Association | USA (PWSA)

Family support: pwsa/usa's family support team provides individuals diagnosed with Prader-Willi Syndrome, their families, and care providers with critical information and resources on pws. We also provide education to medical providers, schools, and professional care givers through ongoing training, toolkits and other valuable resources. We support the family from nicu through all stages of the pws journey. In 2022, pwsa's family support team responded to 3,447 family support inquiries providing support to families in all 50 u.s. states and more than 20 different countries, trained 10 schools and 9 provider agencies, and hosted a virtual sleep summit and a health care advocacy webinar series reaching over 700 registrants for each event.

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. In 2022, pwsa paid out research grants totaling $119,812 and received the findings from 3 of our grant funded projects.

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 2022, pwsa conducted a dc fly-in for 51 advocates representing 21 states who attended a combined 76 congressional meetings and hosted 11 advocacy in action webinars for our community.