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.
PWSA | USA's 2026 Residential Providers Conference Registration is Now Live!
Residential Providers are invited to join us in Savannah, GA, August 21-22, 2026. Click the button below to register to attend.
New Diagnosis?
Fill a New Diagnosis form to receive our Package of Hope, a Parent’s Guide to Prader-Willi Syndrome.
Click Here
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.
Listen Now
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
New Resource
VYKAT™ XR FAQ for Parents and Caregivers
In March 2025, the FDA approved VYKAT™ XR (diazoxide choline), the first-ever treatment for hyperphagia (excessive hunger) in Prader-Willi syndrome. Since then, families and caregivers have had many important questions about this new option.
To help, PWSA | USA, in collaboration with our Clinical & Scientific Advisory Board, has created a comprehensive FAQ document that addresses the most common questions.
Topics covered include:
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Indication / Hyperphagia
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Effectiveness / Monitoring
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Side Effects / Safety
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Interactions / Pharmacology
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Administration / Dosing
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Storage / Pharmacy
Click below to access and download the full FAQ. This resource was developed with support from a grant provided by Soleno Therapeutics. To learn more about VYKAT XR, visit www.vykatxr.com.
PWS Events & Fundraisers
Upcoming Events
Rare Disease Day is a global movement to raise awareness and advocate for the more than 300 million people worldwide living with a rare disease. Held annually on the last day of February, this day unites individuals, families, organizations, and communities to shine a light on the challenges of rare diseases and the urgent need for research, […]
When: Tuesday, March 10, 2026 @ 5 PM PT | 8 PM ETWhere: Online via ZOOM Click Here to Register Join us for a free informational webinar hosted by PWSA | USA to learn the latest updates on Aardvark Therapeutics’ HERO clinical trial of ARD-101. We will be joined by Aardvark Therapeutics Chief Executive Officer […]
Bradenton, Florida 34209
Registration is NOW OPEN for the 12th Annual Clint Hurdle Hot Stove Dinner! Join hosts Clint and Karla Hurdle on Saturday, March 21, 2026, on the beautiful grounds of Bradenton Country Club in Bradenton, Florida – or participate virtually from anywhere – and help make a meaningful difference for those affected by Prader-Willi syndrome. This special […]
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Do You Have a Skill That Could Help Strengthen PWSA | USA?
PWSA | USA is built on the dedication of families, caregivers, and supporters who believe in…
A Legacy of Love: The Story Behind the Hot Stove Dinner and Its Impact on the PWS Community
As we prepare for the 12th Annual Hot Stove Dinner, happening Saturday, March 21, 2026, at…
PWSA | USA and Soleno Therapeutics Take PWS Awareness to the Super Bowl
We are thrilled to share that PWSA | USA has partnered with Soleno Therapeutics on an…
PWSA | USA’s 2025 Research Year in Review
The year 2025 marked an extraordinary period of progress, collaboration, and momentum for PWSA | USA’s…
Holiday Greetings: Consider Participating in PWS Research!
Shared on behalf of Harmony Biosciences: As we move into the holiday season, we all look…
Sibling Spotlight: Ella Frazier’s Heart for Service
If you’ve ever received a New Diagnosis Care Package from PWSA | USA, there’s a good…
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.
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.
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.
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.
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.
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.