First Steps: A Parent's Guide to Prader-Willi Syndrome
Written by parents of children with Prader-Willi Syndrome, this guide is a practical resource to help you understand the PWS diagnosis and navigate the early days with confidence.
Diagnosis and First Steps
Foundational resources to help families understand a PWS diagnosis, learn what to expect, and navigate the next steps.
Quick Facts: What is Prader-Willi Syndrome?
This one-page handout provides a brief overview of PWS. An excellent resource to share with friends, colleagues, and others who are unfamiliar with Prader-Willi syndrome.
Hyperphagia and Nutrition
Practical guidance on hyperphagia, food security, nutrition, and supporting healthy routines for people with PWS.
Hyperphagia in Prader-Willi Syndrome
Explore hyperphagia research, management, and treatments. It will help you know what to expect and how best to help your child with PWS.
Video: Optimal Nutrition for People with PWS
In this presentation, Melanie Silverman, a pediatric registered dietitian, discusses optimal nutrition for people with PWS of all ages.
Behavior and Mental Health
Resources for supporting emotional well-being, managing behavior, building relationships, and strengthening social skills.
PWS Mental Health
Fact Sheet
A quick overview of what to watch for and how to get help if your loved one is undergoing a mental health challenge.
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.
Building Our Social SKills (BOSS) Curriculum
Are you a facilitator ready to use the Building Our Social Skills (BOSS) curriculum in virtual or in-person settings? Download the 80-page curriculum to get started.
Facilitating Social Skills for Children with PWS
This tip sheet offers a quick overview of social challenges children with PWS may face and 7 tips to help build social skills with your child with PWS.
Facilitating Social Skills for Adults with PWS
This tip sheet offers a quick overview of social challenges adults with PWS may face and 7 tips to help build social skills with your loved one with PWS.
Video: Applied Behavior Analysis and PWS
Learn what you can do to help ease and change behavior in children or adults with PWS. Cindy Szapacs, Board Certified Behavior Analyst presents.
Treatments and Care
Information on standards of care, established therapies, clinical considerations, and emerging approaches to treating PWS.
Growth Hormone Guide
Practical overview of growth hormone therapy for PWS, including benefits, monitoring, treatment in adulthood, and additional resources.
Video: Orthopedics, Scoliosis and PWS
Learn about diagnosis and treatment of orthopedic challenges in PWS, including osteoporosis and scoliosis, from Harold van Bosse, MD, and Janice Agarwal, PT.