Prader-Willi Syndrome Association | USA
Empowering Individuals, Supporting Families
PWSA | USA's 24-Hour Crisis Phone Line: (941) 312-0400
PWSA | USA’s 24-Hour Crisis Line provides immediate, expert support to families facing medical or behavioral emergencies, ensuring you are never alone during critical moments. Available 24 hours a day, every day of the year (including holidays), our knowledgeable Family Support Team is always on the other end of the line, ready to listen and help. You can also email our team at info@pwsausa.org.
PWS Advocacy & Awareness
PWS Family Support
PWSA | USA’ Family Support team provides individuals diagnosed with Prader-Willi syndrome, their families, and care providers with critical information and resources on PWS.
PWS Research
PWSA | USA seeks to support research projects with the potential for immediate and high impact for the Prader-Willi Syndrome community.
Registration is now OPEN for the 2025 International PWS Conference.
Join PWSA | USA, IPWSO, and FPWR June 24-28, 2025, in Phoenix, Arizona!
Celebrating 50 Years of Support, Advocacy, and Progress
New Diagnosis?
Fill a New Diagnosis form to receive our Package of Hope, a Parent’s Guide to Prader-Willi Syndrome.
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Join our Newsletter
Join our mailing list for Prader-Willi Syndrome Association updates and other relevant information.
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PWS United Podcast
A podcast produced by PWSA | USA for the Prader-Willi syndrome community! Find PWS United on Apple Podcasts, Spotify, or anywhere you listen to podcasts.
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May is PWS Awareness Month!
The month of May is an important time for our rare disease community because it's recognized as Prader-Willi Syndrome Awareness Month. While advocacy efforts, the fight for research advancements, and the celebration of our loved ones are important 365 days a year, the 31 days in May offer an opportunity to really show off our PWS pride. Find several different ways YOU can make an impact by clicking the button below!
PWS Awareness Month Hub
Join the PWS Connect Community & Research Initiative
Become a part of the PWS Connect Community to help accelerate scientific progress for people living with Prader-Willi syndrome (PWS).
Join the Initiative Today!
Discover the Vital Role of Growth Hormone in PWS Care
Explore PWSA | USA’s comprehensive Growth Hormone Booklet, a critical resource for families, doctors, and healthcare professionals.
Growth Hormone Booklet
PWS Events & Fundraisers
Upcoming Events
We are excited to introduce the United We Brunch initiative, a nationwide effort designed to bring people together to connect, share experiences, gain the resources, and support our community needs. United We Brunch is about fostering hope – one brunch, one state, and one family at a time – uniting communities and creating a ripple effect of awareness and […]
Throughout May, Help Shine a Light on Prader-Willi Syndrome Awareness Month! The month of May is an important time for our rare disease community because it's recognized as Prader-Willi Syndrome Awareness Month. While advocacy efforts, the fight for research advancements, and celebration of our loved ones is important 365 days a year, the 31 days […]
CLICK HERE TO REGISTER When: Wednesday, May 14, 2025 | 9:00 AM PT / 12:00 PM ET Where: Virtual via Zoom Free for anyone to attend! About Ivailo Grigorov Ivailo Grigorov is a Financial Advisor and special needs parent to Lucca, who is 8 years old and has a diagnosis of Prader-Willi Syndrome. After 15 […]
Visit Our Blog
Spotlight on Hope: Mastering Karate with Cameron
submitted by Lisa Graziano, proud mom to Cameron (26, living with PWS) Cameron Graziano, age 26…
VYKAT XR Town Hall Summary
On Tuesday, April 22, PWSA | USA and FPWR offered a PWS Community Town Hall for…
Unlocking a New Path to Treat Hyperphagia in PWS: A Conversation with Aardvark Therapeutics
Hyperphagia, the relentless hunger that those living with Prader-Willi syndrome (PWS) experience, remains one of the…
Zahra’s Night of Light Shines Bright!
What a night! On April 3rd, the Dorson Family, Pia, Dave, Zahra, Ronin, and Zoe, hosted…
Adults with PWS Advisory Board Submissions for PWS Awareness Month
We look forward to learning more about our Adults with PWS Advisory Board members. Please fill…
Request for Prader-Willi Syndrome Research Grant Applications
The Prader-Willi Syndrome Association | USA (PWSA | USA) is a nonprofit organization formed in 1975…
Giving HOPECreating IMPACT
Be a part of something great. We are utterly dedicated to giving hope to those in need, creating a lasting impact for them.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.