Family Support

Your Partners in Hope

PWSA | USA’s Family Support team members are here to help.

We provide guidance and support to individuals diagnosed with Prader-Willi syndrome, their families, and care providers. The team provides education and training to medical providers, educators, and professional care givers about the syndrome, and advocates for the comprehensive needs of the entire PWS community.

If you have a child who has recently been diagnosed with Prader-Willi syndrome, please fill out our New Diagnosis Form.

How We Support PWS Families

Provider Training

Educating Healthcare Professionals

We offer specialized training programs for healthcare providers to enhance their understanding and treatment of Prader-Willi Syndrome.

Family Support Groups

Building a Supportive Community

Join our network to connect with other families navigating Prader-Willi Syndrome, sharing experiences, tips, and emotional support.

School Success

Diligence and Active Participation

Whether it is in the classroom or at home, school can come with many challenges for the PWS community. We encourage our families to utilize PWSA | USA’s Tips for School Success Toolkits! Explore six school success toolkits that share how your child can be successful while navigating learning – whether it’s at home or in the classroom.

Nutrition Guidance

Weight Management Strategies & Support

Access expert advice on managing dietary needs specific to PWS, including tailored nutrition plans and resources for healthy living.

Behavior Support

Managing Unique
Challenges

Receive guidance on behavioral strategies and interventions that are effective in addressing the unique behavioral aspects of PWS.

Financial Support

Assistance for Care and Resources

Explore various financial aid options available to families for managing the costs associated with the care and support of loved ones with PWS.

Legal Support

Navigating Legal and Advocacy Issues

Gain access to legal resources and advocacy support tailored to address the unique challenges faced by families dealing with PWS.

Clinical Trials

Advancing PWS Research and Treatment

Stay informed about the latest clinical trials for Prader-Willi Syndrome, offering opportunities to contribute to groundbreaking research and access new treatments.

Community Events

Empowering Our
Community

Participate in a variety of events that bring together the PWS community for support, education, and advocacy, fostering a sense of solidarity and shared purpose.

Need immediate support?

Call our 24-hour support line: 941-312-0400

PWSA | USA’s 24-Hour Support Phone Line is available 24-hours every day, 365 days a year. Our knowledgeable and resourceful Family Support team members can help answer questions, offer guidance, or simply be there to talk. This support line is also open and available during any holidays where PWSA | USA is closed. In addition, you can reach out to us via email at info@pwsausa.org. We are here for YOU!

PWSA | USA Support Groups

PWSA | USA Facebook Support Groups are safe, secure spaces for connecting with other families to share personal experiences and to learn from one another; all of the groups are “private” meaning only members can see who’s in the group and what they post. All of the support groups are moderated by PWSA | USA staff, however, the information provided in these groups is intended for your general knowledge only and is not intended to be a substitute for professional medical advice, diagnosis or treatment.
Contact us today to be added to one of our Facebook Support Groups.

Visit our Blog

Empowering Diversity and Inclusion for the PWS Community

Empowering Diversity and Inclusion for the PWS Community

In a significant step towards fostering equity and inclusion within our Prader-Willi syndrome (PWS) community, we are pleased to announce a collaborative initiative aimed at improving the standard of care and support for marginalized individuals living with PWS and their families. This initiative, undertaken with the active involvement of several community members, seeks to ensure […]

A Night to Remember: The 2024 Clint Hurdle Hot Stove Dinner

A Night to Remember: The 2024 Clint Hurdle Hot Stove Dinner

The 10th Annual Clint Hurdle Hot Stove Dinner was an extraordinary success, held at the Bradenton Country Club in Bradenton, FL, on March 23, 2024. Hosted once again by the dedicated Clint and Karla Hurdle, the evening was a testament to the power of community. The Hurdles, who have a 21-year-old daughter, Madison, living with […]

Help Needed: Caregivers of Children with Prader-Willi Syndrome and Repetitive Verbal Behavior

Help Needed: Caregivers of Children with Prader-Willi Syndrome and Repetitive Verbal Behavior

Kasey Bedard, PhD, and her team at The Chicago School are seeking caregivers of children diagnosed with Prader-Willi Syndrome (PWS) who exhibit repetitive verbal behavior for a research study at The Chicago School. This study, part of a dissertation project, aims to test interventions that caregivers can implement at home. Study Details: – Duration: 2-3 […]

Scroll to top