Make Your Voice Heard Through Advocacy!
Raising awareness and effective advocacy are essential to ensuring health, safety, and enhanced quality of life for those affected by Prader‐Willi syndrome. As such, the PWSA | USA Family Support team has provided hundreds of families with individual‐focused advocacy. Now, we hope to continue our advocacy efforts by providing training and assistance to parents and caregivers that empower them to advocate for their child or loved one with PWS.
PWSA | USA staff and volunteers are committed to informing the broader community of critical public policy issues and leveraging the power of grassroots supporters to enact change on vital issues – from laws and regulations on access to prescriptions and medical treatments, to government funding of residential placement and new drug research.
Save the Orphan Drug Tax Credit
The orphan drug tax credit is crucial to assist and encourage pharmaceutical companies to develop therapies for rare diseases. Please help us spread the word to lawmakers by clicking on the button below.
Support the STAT Act & BENEFIT Act
The STAT Act
The BENEFIT Act
PWSA | USA & FPWR Joint Advocacy Initiative
Thank you to all who provided feedback and participated in the DCCR Advocacy survey. Your voice is being heard.
Click the link below to download the comprehensive joint response from PWSA | USA and FPWR. We will continue to keep you informed of any developments as we move forward in this process together.
As Prader-Willi syndrome is considered a “rare disease,” extra effort is needed to bring attention to the needs of the PWS community. We must collaborate with law makers to ensure passage of legislation and regulations that help our community and to defeat those that do not. Visit our Public Policy Action Center and connect with your local senators and representatives and help bring awareness to the needs of individuals with PWS and their families.