Rare Disease Day 2025
February 28 @ 12:00 am
Rare but strong. Rare but resilient. Rare but never alone.
This Rare Disease Day (Friday, February 28, 2025), we’re standing with the Prader-Willi syndrome community and the 30 million Americans living with a rare disease. Whether you’re sharing your story, spreading awareness, or fundraising for a brighter future, YOU can make a difference.
- Download our “Media” and “15 Ways to Raise Awareness” toolkits with exclusive PWS-specific social media graphics, advocacy tips, and creative ways to get involved.
- Learn why Rare Disease Day matters and how Prader-Willi syndrome compares to other rare conditions.
- Find out why zebras are the official symbol of the rare disease community—and how you can show your stripes!
- Support PWSA | USA to ensure families impacted by PWS have a strong, united voice for the next 50 years.
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.