February 3, 2026
Today, the rare disease community has meaningful news to celebrate. Congress has passed legislation that includes a five-year reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) Program, increased federal investment in rare disease research, and several additional healthcare provisions that directly impact patients and families living with rare conditions.
For the Prader-Willi syndrome (PWS) community, this moment reflects years of consistent, strategic advocacy—the kind of work PWSA | USA and our advocates show up for every single day.
The PRV Program, established by the FDA more than a decade ago, has helped catalyze the development of therapies for more than 40 rare pediatric conditions—many of which would never have attracted investment without this incentive. Importantly, the program costs taxpayers nothing, yet it has unlocked innovation, accelerated clinical trials, and delivered real hope to families navigating complex, lifelong conditions like PWS.
Its reauthorization—after more than two years of sustained advocacy—means stalled investment decisions can move forward, and pediatric therapy development can continue without disruption. This stability matters deeply for rare disease families who cannot afford delays.
This legislative package also includes several wins that align closely with PWSA’s ongoing policy priorities:
- *Increased NIH Funding: The NIH will receive $48.7 billion for FY26, including a $10 million increase for the National Center for Advancing Translational Sciences (NCATS), the NIH’s hub for rare disease research. These investments strengthen the research pipeline that PWS families depend on.
- *Accelerating Kids’ Access to Care Act: This provision streamlines Medicaid enrollment across state lines, helping families access specialty care—an issue PWSA advocates have repeatedly raised through fly-ins, meetings, and testimony.
- *Telehealth Extensions through 2027: Continued telehealth flexibilities ensure families can access care from home, including audio-only visits and expanded provider eligibility—critical for medically complex and rural families.
- *Newborn Screening Support: Continued CDC funding helps states strengthen newborn screening programs, reinforcing early identification and intervention.
- *Community Health Center Funding & PBM Reform: These provisions improve access, transparency, and affordability across the healthcare system.
None of this progress happens by accident.
This moment belongs to our advocates—parents, caregivers, self-advocates, clinicians, and partners—who have shown up year after year to share their stories, meet with lawmakers, respond to action alerts, and push for policies that reflect the real needs of the PWS community. Your voices helped keep rare disease priorities on the national agenda during a challenging and unpredictable legislative climate.
We are deeply grateful for your persistence, your courage, and your belief that policy change can—and does—improve lives.
While there is still significant work ahead to ensure every person living with PWS can thrive, today’s progress strengthens the foundation for discovery, access, and innovation. It sends a clear signal that rare diseases are a national priority—and that when our community speaks together, Congress listens.
Thank you for being part of this win.
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.