Resource Hub
Find the support and information you need
Whether you’re newly learning about Prader-Willi syndrome (PWS), caring for a loved one, or looking to deepen your understanding, we’ve gathered the resources that matter most, all in one place.
Understanding Prader-Willi Syndrome
Start here to learn what PWS is, how it’s diagnosed, and organizations for research and support.
About PWS
Overview of Prader-Willi Syndrome, genetics, symptoms, hyperphagia, and how PWS affects individuals.
Prader-Willi Syndrome Association
Comprehensive support, including a 24-hour crisis line, family counselors, research funding, and advocacy.
Foundation for Prader-Willi Syndrome Research
Advancing PWS research, funding clinical trials, and maintaining the Global PWS Registry for families.
International PWS Organisation
Global network connecting PWS associations worldwide with resources, conferences, and international support.
Just received a diagnosis? You’re not alone.
A PWS diagnosis can feel overwhelming. These resources will help you understand what to expect and connect with people who’ve been where you are.
About PWS
Start with the fundamentals, what PWS is, how it’s caused, and its key characteristics across the lifespan.
Understanding PWS: Showing Up with Care
Downloadable guide for family, friends, and community members on what PWS is and how to offer meaningful support.
PWS and Hyperphagia: A Caregiver’s Guide
Understanding hyperphagia, PWS’s defining symptom, and practical strategies for managing it day to day.
Colors of Hope
An affinity group for BIPOC families affected by Prader-Willi syndrome, focused on community-driven research, education, and advocacy.
Tools and support for the journey ahead
Practical guides, community connections, and external resources to help you navigate daily life caring for someone with PWS.
PWS and Hyperphagia: A Caregiver’s Guide
Understanding hyperphagia, PWS’s defining symptom, and practical strategies for managing it day to day.
Understanding PWS: Showing Up with Care
Downloadable guide for family, friends, and community members on what PWS is and how to offer meaningful support.
PWS Awareness Toolkit
Social shareables and graphics to help you raise awareness in your community, school, or workplace.
Prader-Willi Syndrome Association
Comprehensive support, including a 24-hour crisis line, family counselors, research funding, and advocacy.
Colors of Hope
An affinity group for BIPOC families affected by Prader-Willi syndrome, focused on community-driven research, education, and advocacy.