For Rare Disease Day 2024, PWS mom and PWSA | USA staff member Melanie McDonald wanted to take the opportunity to raise awareness right in her community of Jaffrey, New Hampshire. Melanie’s children, Henry (12) and Josephine (5 w/ PWS), love their town library and saw it as a great place for families to gather […]
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
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.
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.
Weight Management Strategies & Support
Access expert advice on managing dietary needs specific to PWS, including tailored nutrition plans and resources for healthy living.
Receive guidance on behavioral strategies and interventions that are effective in addressing the unique behavioral aspects of PWS.
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.
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.
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.
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 firstname.lastname@example.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.
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Pitolisant from Harmony Biosciences Receives Orphan Drug Status from FDA for Treatment of PWS The FDA has granted Orphan Drug status to pitolisant, the trial drug from Harmony Biosciences to treat excessive daytime sleepiness (EDA) and behavioral disturbances. The designation shows that the FDA considers pitolisant to be a promising treatment for people with PWS. […]
Neuren Pharmaceuticals is pleased to announce their third site participating in their Phase II, Open Label, PWS Study (Neu-2591-PWS-001) is now open for screening! Important information regarding this exciting milestone: Three sites are now open to enrollment! Rare Disease Research (RDR), located in Atlanta, GA, and Uncommon Cures, located in Chevy Chase, MD (8 miles outside of Washington, D.C.) and […]