A family of someone with Prader-Willi Syndrome holds hands on a beach at sunset

How Family Support Can Help Your Family

The first couple days, months, and years into a PWS diagnosis can be scary and overwhelming. Navigating a PWS diagnosis can come with a lot of fast and unpredictable changes. Our Family Support team is always here to offer HELP & HOPE. From your first days in the NICU to settling into life at home, sending your child to their first day of school to preparing for high school and beyond, to helping usher your child into adulthood and navigating guardianship, we are responding to your evolving challenges and needs 24 hours a day, 7 days a week, 365 days a year. PWSA | USA’s Family Support team provides the encouragement, support, and resources individuals and families need to thrive in the face of a rare genetic condition.

How We Can Help

A diagnosis of PWS may bring a variety of medical complexities, behavioral issues, and highly specialized needs that challenge not just the individual, but the entire family. It is important to know you are NOT alone! Our Family Support team can be found in action where you need them the most. In addition to the robust resources found on our website, here are some ways we support you and your loved one:

  • Early intervention
  • New diagnosis education
  • NICU support
  • Feeding resources and nutrition education
  • Applying for Medicaid, Services, SSI
  • Family Mentoring Program
  • Emotional support
  • Access to 24-hour crisis counselor
  • School transitions
  • Trainings for caregivers, educators, and residential providers
  • Behavior education and support
  • IEP support
  • Understanding food security
  • Programs for social skills building
  • Transition from school to adult support
  • Navigating guardianship
  • Medical and legal support
  • Tools for advocacy and awareness


If you are in need of support in any of these areas, please don’t hesitate to reach out. You can email us at and your inquiry will be directed to the appropriate person. If you are in crisis and need immediate support, please call our crisis line at (941) 312-0400.

Family Support Campaign

Our Family Support Campaign begins April 1st and runs through May 31, 2024. You can support PWSA | USA in the multiple ways we give HELP & HOPE to our families. Simply make a donation to our Family Support Campaign – any amount is an investment with a priceless return! As demand for our services continues to grow, PWSA | USA relies on the generosity of community members like you to make our work possible.

Your gift to the Family Support Campaign means our vital resources will be available in the future for your family and those who have yet to receive their life-changing diagnosis. Together, we can continue to strengthen and grow, and fulfill PWSA | USA’s mission of enhancing the quality of life and empowering those affected by Prader-Willi syndrome.

We are grateful to be here to support families and their loved ones with PWS.

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