Our Approach to Supporting PA PWS Families
At the Prader-Willi Alliance of Pennsylvania, our programs are built around one guiding purpose: supporting individuals with Prader-Willi syndrome and their families through education, advocacy, and community connection. Every initiative we develop is designed to reduce isolation, empower families with trusted information, create meaningful opportunities to connect, and advocate for improved care and resources across Pennsylvania. Whether we're welcoming a newly diagnosed family, providing educational opportunities, building community through events, supporting conference participation, or advancing advocacy efforts, each program reflects our commitment to helping every individual with PWS thrive at every stage of life. As our organization grows, so will our programs—always guided by the needs of our community and our mission to build a stronger, more connected Pennsylvania for everyone affected by Prader-Willi syndrome.
Current Programs
Here are the core programs we offer to support individuals with PWS and their families across Pennsylvania:
Conference Team & Scholarship Fund
A community-driven fundraising program that helps expand access to Prader-Willi syndrome educational conferences. Participants raise awareness and funds while working toward their own conference experience, gaining valuable knowledge, resources, and connections to bring back to Pennsylvania families. As the program grows, fundraising efforts will also build the PWAofPA Conference Scholarship Fund, creating sustainable opportunities for more individuals with PWS, family members, caregivers, and self-advocates across Pennsylvania to attend future conferences and benefit from life-changing education and support.
Healthcare Partnerships & Provider Education
PWAofPA is committed to strengthening the care available to individuals with Prader-Willi syndrome by building partnerships with healthcare providers across Pennsylvania. Through education, resource sharing, and collaboration with medical professionals and allied health providers, we aim to increase awareness of PWS, promote evidence-based care, and improve access to knowledgeable, compassionate services. By working together, we can help ensure that individuals with PWS receive informed care throughout every stage of life.
Legislative Advocacy
PWAofPA advocates for policies that improve the lives of individuals with Prader-Willi syndrome and their families across Pennsylvania. By working with lawmakers, partner organizations, self-advocates, and families, we strive to increase awareness, expand access to essential services, and promote legislation that supports the health, education, and inclusion of those living with PWS. Together, we are helping ensure that the voices of the Pennsylvania PWS community are heard where decisions are made.
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Stay tuned for our 1st Hike to Harrisburg planned for May 2027.
Family Support and Community
Living with Prader-Willi syndrome can feel isolating, but no family should have to navigate the journey alone. PWAofPA is dedicated to building a welcoming community where individuals with PWS, families, caregivers, and supporters can connect, share experiences, and support one another. Through family events, educational gatherings, peer connections, and outreach programs, we foster meaningful relationships while creating opportunities for every family across Pennsylvania to feel informed, included, and supported.
Conference Scholarship Team
Learn how our Conference Scholarship Team helps PA families access educational conferences.
How to Participate
More information coming soon.