Prader-Willi Syndrome Resources

We’re happy to offer these free resources to help you get the information you need about Prader-Willi syndrome.

Hyperphagia-ebook-resource
Ebook

Hyperphagia in Prader-Willi Syndrome

This overview of hyperphagia covers research, management, and treatments. It will help you know what to expect and how best to help your child with PWS.

social-skills-ebook
Ebook

Social Skills and Prader-Willi Syndrome

Understand how PWS affects social skills for children, youth, and adults. Learn about setting target areas for improvement and specific ways to help.

mental-health-ebook-resource
Ebook

PWS Mental Health Guidebook

Mental health challenges in PWS include depression, bipolar disorder, psychotic symptoms, and more. Learn about diagnoses, treatments, and how to get care.

genetic-therapy-ebook-resource
Ebook

Genetic Therapy for Prader-Willi Syndrome

Learn about approaches that researchers are taking toward genetic therapy for Prader-Willi syndrome.

ABA-PWS-video-resource
video

ABA and PWS

Learn what Applied Behavior Analysis is and how it can be used with adults and children with PWS. Presenter Cindy Szapacs is a Board Certified Behavior Analyst and the parent of a son with PWS.

Optimal-Nutrition-video-resource
video

Optimal Nutrition in Prader-Willi Syndrome

Learn about optimal nutrition for all ages in PWS, and how diet recommendations have changed. Melanie Silverman is a pediatric registered dietitian who has been treating Prader-Willi syndrome for more than 10 years.

standard-of-care-video-resource
video

Standards of Care for People with PWS

Get information and insights on caring for your loved one with PWS from Dr. Jessica Duis, who established the multidisciplinary clinic for PWS at Vanderbilt University. 

orthopedics-video-resource
video

Orthopedics, Scoliosis & PWS

Learn about diagnosis and treatment of orthopedic challenges in PWS, including osteoporosis and scoliosis, from Harold van Bosse, MD, and Janice Agarwal, PT.

first-steps-ebook-resource
Ebook

First Steps: A Parent's Guide to Prader-Willi Syndrome

There is hope for children with PWS. Written by parents of children with Prader-Willi Syndrome, this ebook provides crucial information, strategies, and next steps.

understanding-PWS-slide-resource
slide deck

Understanding Prader-Willi Syndrome

These 18 slides, with graphics, help raise awareness of the symptoms, causes, and challenges of Prader-Willi syndrome, and how research provides hope.

Growth-Hormone-fact-sheet-resource
Ebook

Growth Hormone Therapy for PWS

If you've just received a diagnosis of Prader-Willi syndrome for your child, read this fact sheet about PWS and getting started on growth hormone therapy.

What-is-PWS-fact-sheet-resource
Ebook

What Is Prader-Willi Syndrome?

Prader-Willi syndrome is the number-one genetic cause of life-threatening childhood obesity. Research offers hope for the future. Get the facts with this fact sheet.

advocacy-toolkit-resource
slide deck

PWS Advocacy & Fundraising Toolkit

This toolkit gives you the talking points, research facts, and links you need to successfully advocate and fundraise for PWS research.

first-steps-SYS-ebook-resource
Ebook

A Parent's Guide to Schaaf-Yang Syndrome

There is hope for children with SYS. Written by parents of children with Schaaf-Yang Syndrome, this ebook provides crucial information, strategies, and next steps.

SYS-fact-sheet-resource
Ebook

What is Schaaf-Yang Syndrome?

Schaaf-Yang syndrome is a rare genetic disorder caused by a disruption of the MAGEL2 gene. Research offers hope for the future. Get the facts with this free fact sheet.